ADHD Assessment Truths: Who Can Diagnose, What to Expect & Why It Matters

0:00You go for an ADHD assessment, there's one big area which is not part of the diagnostic criterion. There is no mention of emotional dysregulation or rejection-sensitive dysphoria, and it's one of the most prominent problems in this condition, not just in kids, also in adults. Really debilitating. Well, then it's no wonder we've missed so many people. Exactly. Welcome to The Hidden 20%, our neurodiversity charity on a mission to rewrite the future for people who think differently. Together with you and an eclectic range of brilliant guests, we can break the cycle of silence by smashing outdated stereotypes, exposing the myths and sharing the most up-to-date truths about what it really means to be just different, not deficient.

0:51The best way you can help is really simple. Subscribe so you never miss an episode and if you can donate to our charity through the link below. Enough preamble. I'm Ben, your host. Let's get into today's episode.

1:12shai welcome back we are gonna treat this episode as a full exploration of the assessment landscape let's call it who can assess somebody for adhd in the uk we've got the nice guidance right which is the national guidance on this. And there have been different organizations like UCAN who have inputted into that. It's a bit vague right now. Okay. So it says any suitably qualified healthcare professional. Actually, that's what it says. Yeah, yeah. That has opened up to lots of different types of professionals doing this. And what I will say is it's not necessarily about, I think, the type of professional doing it.

1:55It's the level of experience. Okay. Back in the day, Depression was only treated by psychiatrists Was it actually? Back in the day Really? Originally Now you can go to your GP and Yeah You get prescribed antidepressants just like that Yeah In the future when this gets more and more recognised Which it is becoming It will even be treated in terms of the less complex cases In primary care Okay It will be Yeah In general practice in the future X many years down the line it will be Anything that's common eventually gets treated in primary care and then what will happen is only when it becomes more complex so it means is this adhd with other conditions which i know we'll talk about or is this higher risk meaning is there a lot of substances involved have they got suicidal attempts is it that level yeah then it will come to people like myself in secondary care this will be the future okay which is what happens with every condition yeah that's interesting about depression that that's where it was many many years ago and Now where it is.

2:56Yeah. So therefore, why is defined as a healthcare professional? Obviously, look, a consultant psychiatrist has probably got the most experience, I would say, in terms of general mental health experience. Okay. And in a condition which is highly comorbid, which means where there might be other conditions going on or not, your consultant psychiatrist is going to definitely have the most experience. Okay. But then what I would also say is a nurse specialist who has been doing this for 10 years compared to a consultant psychiatrist that started it 12 months ago. Yes. There's a difference there too.

3:29So can a GP assess someone for ADHD? They have to be really trained. Okay. Is there a qualification that you need in order to assess someone for ADHD? So this is the problem. And I think what's potentially going on is a bit of an issue is that people are learning on the job with this, really. So if you work in a service where they're doing ADHD, you will learn on the job. It's still not part fully of curriculums. So I know, I think it was a year odd ago, where they have developed a thing, the Royal College of GPs developed a thing called GPs with special interest. Okay. So for example, you get GPs with special interest, for example, in dermatology.

4:06Okay. Where basic skin level conditions can get managed by GPs who have taken certain diplomas in that. Yes. They have got that with ADHD, but that pathway is not really clear or developed. Okay. I think over time, what I'm trying to say is this will become more commonplace. Yes. So right now, if I want to go for an ADHD assessment, what are my options? Three options, really, in England. Okay. So in England, either you can go and be referred to your local NHS trust, or you can go down the right to choose pathway, which is again, essentially NHS referral. Or you can be seen privately. And often with all three, the outcome of what they will try to do will be the same.

4:56So let me explain that. You'll have an assessment if you are diagnosed and then say treatment is recommended in terms of say medication, for example. They will do a number of follow-ups to optimize your medication regime. and then they will request something called shared care with your GP. All three pathways will do that. Okay. So all routes go back to the GP? Ultimately to the GP. That's what will be the request. Okay. Now, GPs are not mandated to agree to shared care agreements at the moment. Yeah. This might change in the future, I think, but at the moment they're not. And there's lots of reasons behind that.

5:34And therefore it's up to the GP. Yeah. And there's lots of reasons behind this. Many different reasons. Number one, the GP might say, I don't feel comfortable with prescribing these medications because I'm not qualified. I'm not a suitably qualified healthcare professional to do this. Yeah. Which is a fair thing to say. Yeah. Number two, sometimes there are issues around funding. Explain that. So we're going into very political areas now. Yeah, yeah. But look, this is what it is. This is what's going on. So number one, at the moment, unless there are local agreements in the area, GPs do not have a national pot of funding mechanism or commissioning pathway where they are paid for this activity.

6:12Okay. So you could look at ADHD like a chronic condition. Okay. It doesn't go away. Sure. Right? Yeah. Patients who are on ADHD meds, as per NICE guidance, need to have monitoring. Six monthly blood pressure, heart rate and weight checks, annual reviews. Okay. None of that right now, unless they have a local funding agreement with their local healthcare borough, that's not part of national funding for GPs. Over time, that generates a lot of work for an already busy GP practice. Yes. Right? So I have a lot of empathy for GPs, actually. That's a lot of extra workload now, which there is no funding for.

6:49Yeah. Right? They have to make up that in their own budget. That's hard to manage. And then number three, if the GP feels that the provider might not be up to standard, and this is where there's a lot of variability, then they might also refuse on that ground. Because there is variability in standards. Some people will have very detailed reports, for example, and some people will have a two-page. yeah that is also a consequence of culture as well so i'll give an example in private clinics we might see patients that are coming and i'm not knocking any other country here sure from other countries with very basic reports now the reason why that might be is not because they had a rubbish assessment it's because adhd is so commonplace in those places one bit of paper they don't need 12 pages of a report because it's so commonplace yeah do you see what i mean like i know like for example, in South Africa, their family doctor does a consultation, like their GP does it.

7:47And you're not going to have a 12-page report before you start antidepressants. No. That's not going to happen. No. So there's an element of that as well going on. Because there's not standards, there's not norms in terms of reporting, pathways, procedure. Exactly. So that's where, you know you had the NHS England task force and I'm guessing one of their tasks would have been to try and have a standard of what what is a good assessment yeah what is an appropriate medication titration what do these standards look like are there any titration standards being the monitoring of meds yeah meds so typically in a titration of any medication you're looking at what's the benefits what's the side effects what's the treatment duration you want to try and get people to a medication regime which is lasting for as long as possible throughout the day with maximum benefits and minimal side effects really as basic as yes which is so sort of basic right but then i think a lot of things start to come with experience you know there's an element of how much you can learn but you need to do and until you do yeah You don't know.

8:58Yeah. Right. But this trajectory has happened in so many other conditions. This is not the only one. Right. Why have we not learned from before then? Because so ADHD was not part of the diagnostic criteria in adults until I can't remember what year it is. We'll have to check this. 2008. 2008. So it wasn't in the NICE guidance. So it's not going to be part of the curriculum anywhere. Yeah. Right. I was in med school from, what, 2000 to 2006. I don't even remember learning about ADHD. And I was at King's where the Institute of Psychiatry is there, right? I don't really remember it. And if there was mention of it, it would have been the classic hyperactive schoolboy.

9:41Yeah. Which we can talk about as well, why that's happened. Yep. So this is quite a baby, right, in terms of research, actually. And infrastructure, therefore. Correct. So this has been very much a condition that's been seen in children and adults, adolescent services, but even then, the really disruptive kids. Yes, the extremes. Right? If you're tearing up the classroom, then we've got to do something about you. Yes. But if you're just quietly doodling, you're not a problem. And in a classroom of 30-odd kids where there's bigger problems, you're going to get missed. Yes. 100%. Yes. This is why, because this is only really so recently been recognized.

10:22And I think also post-COVID is where we've seen a mental health explosion. The secondary effects of COVID were mental health. Initially, we were worried about physical health after COVID, right? Saving people's lives. Yes. Physically. The secondary effects of COVID have been mental health. So a lot of people that had closet problems are put in a stressed environment. it's a stressed environment you can't come imagine if you're single in covid yeah and you're in a one-bedroom flat yeah that's hard for anyone in a city in the city right yeah that's hard for anyone yep any problems that you had are now going to come out to the forefront and that's why after the secondary effects of covid we've seen is all mental health issues right we're in the mental health evolution now or whatever you want to you know that that's what we're in now the era the era.

11:13So that's where a light is now being shone on these things. So therefore, if I want to go for an ADHD assessment, I have these three different pathways. That's in England. That's in England. So let me just now, just in case we've got viewers outside of England. Yeah, yeah. In Scotland, Ireland and Wales, there is no such thing as right to choose. Interesting. So your only options are you either wait a very long time for your local NHS service. And in certain places, I know in Wales, it's even more complex than that. There are barriers to entry. So in Scotland, from what I've understood, and the audience can correct me here if I'm wrong, but this is what I've understood.

11:56You can only be seen in the NHS if you have severe behavioral problems associated with ADHD. so you're that really dysfunctional person okay then you get seen if you have got other comorbid complex mental health issues yep right sounds like a crisis a crisis patient otherwise you're not even going to get seen in the nhs in wales from what i understood from some patients that i spoke to so these are people that have come privately right they make you initially see a general community mental health team you wait to see that person if they then think you need to be referred then you wait for years to be seen by the adhd service and that's okay it's slightly less of a weight with kids but it's still a weight so now imagine if you're struggling academically you've probably fluffed your gcse's and a levels by the time you even see anyone yeah it is what it is right and then i'm pretty sure yeah in ireland they don't have right to choose either.

12:55So right to choose is an England thing. And even that, they're trying to clamp down on it. I mean, no offense to you by this. How difficult is it to do an ADHD assessment? Okay. So if you see someone that's really straightforward, perhaps not so difficult. What really straightforward means is they don't have many other mental health conditions going on. Now, if you come across a patient that might have lots of other mental health conditions going on, and they might be on lots of other mental health medication, you need to know enough about those conditions to sort of see the wood from the trees.

13:28To be able to piece things apart and together. And this is where I think, therefore, in the future, you're going to have some of the stuff sitting in primary care. Yes. Like you do for depression and anxiety and any of these other conditions. Yeah. And then when it goes beyond that, then it will move to secondary care providers. Why do we have all of these siloed neurotype assessments? we've seen in some areas where they've started trying to integrate it into the community mental health services which is what makes sense because then you have a multidisciplinary approach to your condition now what would be really the gold standard is if you had in your service so say you're looked after you've got a psychiatrist you've got a nurse you've got a psychologist for the talking therapy side and then you have an ot to help with the job applications with the reasonable adjustments, all that kind of thing.

14:22That would be perfect, right? I think the bottom line is funding. That's the real issue. Multidisciplinary teams are expensive, very expensive on a mass scale. The funding that's required, community mental health teams barely have enough funding right now for all these other conditions. Now, if you say ADHD has a point prevalence of around 7%, put all of that into community mental health teams as well, that's overload. We're dealing with a stretched system. We are dealing with a stretched system. And yet, what did I see? ADHD is still costing unsupported. The government's 17 billion a year. And so you...

15:09But governments are in power for what? Is it four years at a time, right? Yep. So you're just looking at the next election. Yep. Yeah. This is for everything now. Yes, absolutely. It's a cycle. Right? Yeah. So you're looking at the next four years. Yeah. There's a minimum of 20 % of your votes, right? But what's the currency of elections is votes. Sure. Like you said. The most costly area in mental health care is when a patient gets sectioned and has to stay in hospital. If you get sectioned under a section three, you might be an inpatient in hospital for six months. Yep. I've done it for three.

15:47It's incredibly expensive. Yeah. Incredibly expensive. Yeah. When I worked in a medium secure unit, now this is where someone might have committed an offense and they, instead of going to prison because of mental health issues, they were in mental health, this medium secure unit. Yep. I think the cost at the time was something like four or 500 pounds a night. Yep. Per night. Yep. Okay. So a community, like a normal mental health hospital might be a bit less than that, but it's still very expensive. Imagine it, you're staying in a top five star hotel in London. Yeah. multiplied by how many people across the country.

16:18So if the most expensive part of healthcare is a hospital admission, and now you're a government, which patient are you going to target? You're going to target the person that's about to jump off the bridge. I'm saying this bluntly, and I'm not trying to be insensitive to people here. So where are you going to put your money? Into the crisis teams. So the crisis mental health teams are the teams that sit as gatekeepers for people who... But you see, that doesn't make any sense to me. But this is what they're doing. To put it at the end, not at the beginning. The prevention. Yeah. Yeah. In general, what's going on in the NHS generally, and this is not a knock onto the NHS.

16:54No. I work in the NHS. Yeah. But this is the situation that we're in. Yes. We're firefighting. Yeah. In every sector. Yes. But not in every trust. Not in every trust. So this is the other thing about healthcare. We talked about silos. You have a big pot of money, which is your mental health budget. But that's not how it works. Yeah. Each healthcare borough governs its own budget. So there might be different priorities for different healthcare boroughs. So it starts to, I don't like the words postcode lottery, but it can be variable, right? Yeah. It can be variable is all I'm trying to say. But people sat on the wait list will see that too, right?

17:33In terms of waiting times. It's not uniform. No, it's not uniform. And that's where, to be fair, probably right to choose services have been very good, right? Sure. But that only applies in England. Yeah. Yeah. I didn't know that. That's interesting. And there has been tried to be clampdowns on this as well going on. So the government have been trying to introduce indicative activity plans. What's that? Basically to try and limit how much money is spent on right to choose per borough. Okay. Because what they are trying to probably do is say, right, we will give this much budget to right to choose per year.

18:13Yes. That's probably like the national kind of picture plan. And actually charities like ADHD UK have been massively contesting that. Yes. Because it just does not anywhere near meet the demand in those areas. And eventually what you're then doing is, it's like you're creating another long NHS trust waiting list in those areas. Yeah. You're calling it something else. Yeah. That's what you're doing. Yeah. Yeah. It's a very difficult area and it's a very difficult landscape because probably from the government's point of view, just sitting on both sides of the fence here, right? They're probably thinking, well, there's more and more and more cases.

18:53Well, there's over diagnosis, isn't there? Right. So that's why they're doing these reviews. And what they're seeing from their point of view is probably, well, now we've got more and more and more people that are going to be on more and more medication that's lifelong because there's no cure. Yeah. If there was a cure, like just a simple here's the antibiotics for 14 days you wouldn't even have any of these conversations going on so that's what's going on right but the irony as i see it and it's easy standing on the sides right going yeah but if you could help people you'd avoid the unemployment the prison the suicides the associated mental health the trauma the blah the blah all the stuff all the dreadful statistics for neurodivergent people where we absolutely over-index versus the norm, you could quote-unquote avoid.

19:45But it's the longer term, isn't it? That you don't get those results overnight. You don't get those results overnight. You don't get those in your election period. You don't get that in the four years, right? Desperately want to sort all this out. This is becoming a maybe different debate now, but if we look at the economy and they were saying how much where X many billion pounds in deficit. So what the government are probably doing is they're just trying to plug every hole that they possibly can. Sure. You are right. Those are longer term outcomes. And I think there's definitely been more studies done in the US that show these, like the longer term picture, because this has been studied for longer.

20:21Yeah. And a lot of this basically boils down to the fact that this is still a baby in research in every aspect and every angle. Yeah. From the point of view of the assessment to the point of view of the ultimate economic outcomes, the mortality rates. Yes. Right? There was a big study done in the British Journal of Psychiatry. I did a talk about this with ADHD UK. I think it was a year or two ago. And they looked at GP records. And they looked at, I think, something like 9 million records. It was a massive study. Okay. And they found that if you correct for all confounding factors, confounding factors means any other factor that might contribute to an outcome if you correct for all of those and i'll give you a simple example of what this means having adhd alone reduces your life expectancy i think it was something like and i might i'll probably get corrected in the comments on this but something like seven or eight years or nine years eight years on autism in terms of fine so what that means is if you take shy who doesn't have adhd and you match him with Shai who does have ADHD, who looks exactly the same, same ethnicity, same age, drinks the same, smokes the same, does everything the same, that ADHD alone reduces his life expectancy.

21:44Why? Because there was a study before the British General Psychiatry with Russell Barkley, big guy in the field. He's an American psychologist who did some research into this. And he found that because you're more prone to impulsive behaviors, increased substance misuse, increased alcohol misuse, increased smoking, big one actually, big one. Cigarettes are a killer. Yes. More likely to have road traffic accidents. So basically all these impulsive behaviors. Sure, sure. Increase your mortality either directly. Yes. Or indirectly faster. Yes. In terms of injury. Yeah, yeah, yeah. So basically, you're more at risk of mortality at a younger age.

22:28So there's definite data out there. The problem is, I think, is because it's so long-term data. It's not like cancer. So it's not like pancreatic cancer. Your life expectancy is six months. But cancer is a disease. So because it's such an obvious connected outcome that's quick, there'll be loads of money put into things like cancer. and I'm not saying they shouldn't be, they should absolutely be, so don't take the wrong message to anyone that's watching this. Yes. But because this in some ways to an untrained eye is much more nuanced and you're looking at things 20 years down the line. Yep. And there's no blood test.

23:08Exactly. There is no scan, and there won't be. That is why I think there is more focus put into how much is this costing us as opposed to how much it will save us. The irony though, I know I keep talking about the irony. The irony is there's half a million people sat on the NHS ADHD wait list for an assessment. Half a million people that pissed off. Half a million people that you could make really happy by sorting out the system and them getting their assessments. Half a million is not an insignificant number. Half a million who are within families and workplaces is definitely not an insignificant number from a four-year cycle of a government and an election.

23:55And they could contribute back because I remember doing a presentation on this. There's a census study that was done in the US. And one of the biggest economic impacts is lack of employment. People not being able to get jobs with their ADHD symptoms. That money could eventually come back to the system. Absolutely. Right. But it will take time. Sure. But it could come back to the system. We can't solve that now. But what do you think makes a good ADHD assessment? Okay. So we should break this down into currently what's the diagnostic criterion. Okay. And then we'll talk about what's missing in the diagnostic criterion.

24:36You go for an ADHD assessment typically, you're going to get some pre-assessment forms, which is probably the bane of a person's ADHD existence. But anyway, that's where we're at. So a few of those forms, you're going to complete yourself. And this is the next tricky bit. A few, a couple of those forms need to be done by someone else. Now, when we look at these forms, and this will probably need to be updated in the future, they're very much geared to how you would do an assessment in a child. First flag. First flag, yeah. So one form will be asking about ADHD symptom frequency. One form, now this depends on services, that this might vary, but one form might be asking about what's called functional impairment.

25:24It'll be asking about how does this impair you in different domains of your life? So how does it impair you in education? How does it impair you in work? How does it impair you in relationships? Does it impair you financially? Does it impair your self-care? Different areas. Some services may or may not ask about autistic traits. Okay. Because we see an overlap. Yeah. Some do, some don't. Not technically part of the national guidance to ask about that in that stage. Then there'll be some informant reports. One of them will be asking someone else who knows you well about you as an adult. Sorry, no positives, right?

26:01Nothing about what you do well. Not currently. not currently yeah it's not necessarily a strengths-based thing yeah and that's because that's the way the guidance is sure which we'll come to so that that's one of the caveats actually one of the tenants of the nice guidance is this should be significantly impairing you in at least two domains of functioning yeah i know so if it's not impairing you it's but the way that they are impairing you you can't be adhd is but the way that the reason for that though and i'm going to I always keep playing devil's advocate on this. People forget what the last D of ADHD is supposed to be.

26:39What's the last D? Yeah. The disorder. Yes. So if it's not impairing you, you could argue, how is that a disorder then? But anyway, that's just something to think about, right? People will be jumping up and down watching in the comments. But that's just something I was just throwing it out there, right? Yeah. So coming back to the forms. So one informant report is based on you as an adult. It's quite in depth. There's 18 questions on that. If the answer is yes, they're expected to give some examples. If the answer is no, it's no. Similarly, there's an informant report based on childhood symptoms.

27:14Now, not everyone can get those. So what we might do with the childhood one, some services we do, is we'll give them another form that they do themselves called a Wender Utah Rating Scale. It's asking about things when they're younger. That they can remember. That they can remember. It's the best that we can do. Sure. right? It's interesting because, you know, they'll say, oh, ideal gold standard of evidence is school reports. At a certain age, who's got their school reports? I think there's something pathological in that itself, right? When you hit a certain age, if you're still holding onto your school reports, but anyway, that's a whole different...

27:46My mum's still got mine. Right. I don't have mine. So if we look at now the DSM criterion, the first step is essentially asking whether the patient has enough symptoms. Now I call it the three Ps in this industry. It's a colloquial term. In order to score, symptoms have to be painful, persistent, and persevering. Okay. So painful means that they do have to, this is according to the DSM criteria now. Yeah. They have to impair you in at least two areas of functioning. And how many areas of functioning are there? So, areas of functioning. Emotional. So number one, typical things that you'll see is emotional dysregulation.

28:34It's not a formal thing, but that is one area that if you're doing this assessment, you should be asking about. 70 to 80 % of people with ADHD that's undiagnosed and untreated have symptoms in their lifelong symptoms of cycles of depression and anxiety. That's high. Very high. So that's another one. Rejection sensitive dysphoria. Yeah, RSD, CPAR1. Yeah. So that's not part of the diagnostic criterion. If you're in this field, you better be asking about this. So that's one domain of functioning. The next one, education. Did it impair education? Now this can be quite subjective actually. On an extreme end, someone might have really just dropped out of school at a young age.

29:19Been excluded. Yeah, had special educational needs. Yes. That type of thing. Yep. But that's not everyone. For many people, they'll describe this as a pattern of, when I was in a controlled environment in school, I was okay. Maybe not the top student, but I was average. Yeah. And then when I went to uni and I was left to my own devices, it literally all fell apart. That transition is one that keeps coming up time and time again of that, I mean, I guess transition to adulthood, right? And being out of a structured institution like a school. No, the reason for this is because people with ADHD need accountability to get their stuff done.

30:07We call this symptom procrastination. Yeah, yeah. Right? Yeah. And there's a chemical reason behind this. Okay. So procrastination, what they'll often say is, if there's not a hard deadline, I just won't do it. This is a bit of my theory here. Okay. Okay. Because this is the way I make sense of this from a chemical perspective. Okay. The two chemicals that are at low levels are dopamine and noradrenaline. Noradrenaline breaks down to become adrenaline in your brain and nervous system when it activates your nervous system. Yeah. Noradrenaline breaks adrenaline and that occurs in fight, fright or flight situations.

30:49Yeah. In modern day society, what is a fight, fright or flight situation? My boss needs that presentation for tomorrow. Sure. So that activates now my low noradrenaline levels, kicks in my nervous system, and then I get the thing done. Yes. So I needed that driver to get my things done. Otherwise I'm at a lower state of this. Yeah. So a typical history will be, I was okay when I was in a very controlled environment. When you go to uni, you have to often impose your own deadlines. Yep. Where it then plays out, for example, is you get that big dissertation at the end of the degree or whatever. That's where it really comes apart.

31:27Yeah. Cram, cram, cram. Yeah. Or they just don't manage it. Yes. Right? So then they'll often describe, I didn't meet my potential. Okay. That's a big one that you hear. Okay. So yes, on one extreme, you might hear the kid that was so disruptive, etc. which was the traditional ADHD diagnosed kid. But that's not always the case. You'll hear the story happening, unraveling later. Some people might drop out of uni, for example, or change their course like 10 times or whatever. But you're failing on two. Yeah, so there's more. You've done emotional education. Employment. Okay, yeah. Next one. So this, you might see a few different things.

32:13On one extreme end, they just couldn't get into employment at all, really. Or they just kept getting fired or performance managed. But again, that's one extreme end. What you might hear are the permutations of this. I've never really developed in one career pathway. I kept hopping around from one thing to another. Or if RSD is a big component, I never met my potential. I didn't put myself forward for that management job because I just don't think I'd be good at directing other people. Yeah. So again, they'll feel like they never met their potential. So that's emotional, education and employment.

32:51Relationships. If you've got RSD, it is going to impact relationships. There's no way that it can't. Yes. Number one, in romantic relationships, they might describe feeling very insecure. At its worst form, not even get into relationships because of the fear of rejection. Yes, yes. Or they might have fractured relationships because they read too much into things and the relationships broke down. So they'll say things like, I started the relationship enthusiastically and very intensely and people think I'm too much. Yeah. Or I lost interest. Yes. Things like that. Yes. So relationships. And then therefore, not just romantic relationships, but relationships in other places.

33:32Friendships, colleagues. So another thing you hear with friendships, I've lost a lot of friendships because I just failed to keep in touch with people. I didn't respond to the text message. And over time, you just feel weird to then suddenly respond to it. And certain relationships wither away. Relationships at work can be impacted. They might be seen as a bit too much. They're a bit rude. They're interrupting in the meetings at the wrong time. They're talking over the customer. Or they're socially retreating because of their RSD and they're avoiding all the work parties and they're not a team player.

34:09That kind of thing. So, emotions, education, employment, relationships, hobbies and interests. People might have a history of starting lots of hobbies and then not continuing them. Or projects, business projects and things like that. Financial. Okay, that's six. Spending money impulsively. Yes. And in its extreme form, that will be, I rack up big credit card debt. So that's not everyone. No. For a lot of people, it's, I lose track of budgeting. Yeah. I keep making lots of little impulsive Amazon purchases. Yeah. I haven't paid parking tickets in time. I haven't paid parking tickets, things like that.

34:45Next one is sleep. Okay. Now, interestingly, there is, people should look her up. Professor Sandra Coogee. Okay. Dutch psychiatrist. Big. You know, she gives a lot of talks about sleep and ADHD. Okay. She's done a lot of research, which shows delayed sleep cycles. in ADHD. So melatonin is a chemical that tells your brain it's time to switch off, go to sleep now. That's released about three hours late in the brain. For ADHDers? Yes. Right. And particularly in children. So that's why melatonin is often prescribed to children with ADHD to help regulate sleep cycles. Okay. It's often used in adults for jet lag, for example, to regulate the circadian rhythms.

35:36It works in some cases in adults, but it definitely works more in children. Sleep is often impacted. So what that can look like in today's modern society is people procrastinate going to sleep. So there'll be people here at two, three in the morning watching this on their social media, right? And they're putting off their sleep. So then what's going to happen naturally the next morning when they have to wake up for work or the kids or whatever where they've got social jet lag, I mean, knackered because they didn't sleep on time. Yes. In a more extreme form, they feel that they've had a restless sleep.

36:15Sure. So what's happening in the day where the mind is going at a million miles an hour translates into nighttime. So those people will often describe really vivid dreams and they wake up unrested. Yep. And in this real extreme form, they might be frequently waking up during the night. Yep. right and you see that more even in children actually yeah where the sleep is completely disturbed disturbed and then they might get diagnosed with things like night terrors other things so that's sleep what else self-care now this can really vary in its extremes self-care in its worst case i've had people who which i mentioned in our other episode they're literally walking out of their showers with a shampoo in their head yeah not joking they're forgetting to eat or drink they're being reminded to go to the toilet I've had patients that come to see me that will show me reminders on their phone to go to the toilet in it's extreme that's not everyone in it's less extreme forms there's either too much milk or too little milk in the fridge so you've gone shopping you've bought items that you didn't need or you've bought more items that you've already got items of and not of what you need I know what you need.

37:30But then in other forms, like you mentioned, household admin. Yep. Not paying the parking fines until you get the warning to go to court. Nowadays, most bills are done on direct debit, but you'll often hear people say, oh, no, my partner looks after all that. So it's like, well, what if you were on your own? Yeah, yeah, yeah. What would you do? Yeah, yeah. And where it can fall apart is when they have children and they have to, you know, oh, I forgot that today they have to be dressed as a teddy bear. Sure, sure. For school. Yep. I'm the only parent that forgot I missed that WhatsApp message in the group.

38:01Yes. That's bloody embarrassing. Yeah. For mums. Yeah. And dads. Yeah. So that level of personal care. And then again, actually maladaptive coping mechanisms. Maladaptive coping mechanisms can be different things in different extremes. Drugs and alcohol. Sure. Might be one. But then even in other lesser extremes. Shopping. Shopping. Food addiction. Yeah. Lisdexamphetamine. which is a long-acting amphetamine-based stimulant, is actually licensed, I believe, in the US, if I'm not mistaken, people can correct me if I'm wrong, for binge eating disorder. Okay. One thing that you sometimes hear some people with ADHD will say is, I've been diagnosed with eating disorders when I was younger.

38:47Now, eating disorders are often thought of as the person who's just really slim and doesn't eat anything. That's not only the only type of eating disorder. you get eating disorders where people are binge eating that's linked to dopamine yes because they were getting their dopamine yes from that you can change how you feel through food food right and then they developed an almost an unhealthy relationship with food yes because it's often not the case that people are going to get their dopamine from that salad sure sure sure oh god i'm really craving yeah yeah lettuce that's not how it works yeah they get it from the carbs rich foods yep so that brings its own health problems over time we mentioned earlier smoking yeah some people might be getting it from the nicotine yep which is you know a killer in itself so yeah basically maladaptive coping mechanisms gambling whatever yeah right anything else on the list because i'm really struck by you only need two it's very little yeah yeah actually it's actually very little when you think about all those things you've just been through all areas of our life and you're like, I've only got two that are kind of going wrong.

39:57So I said to score, they have to be painful. So we've just gone through the different areas of functioning problems that you can have. Yep. That's painful. Persistent. Persistent means it needs to be lifelong. Now this is in a very topical area. Okay. Because what about the woman who was, let's say a lower support needs. So they've been doing that their whole life and now they hit perimenopause and menopause, the hormones play a role and now they're presenting differently. Yep. Now, technically, if you go from a textbook definition, that woman is not going to meet the diagnostic criterion because there's not a childhood history of symptoms.

40:46Yes, yes. But I know from my experience that if you treat those people, they can improve. So this is a contentious area. Yep. Right? Which I don't have the answer to. Sure, sure. So right now the definition is if there's not a clear cut childhood history of symptoms, you're not going to meet the diagnosis. You can't be. Now, what if your ADHD was so severe? Now, let me just give you a case, for example, where your parents had raging ADHD. They were heroin addicts. You were put into foster care. You have no history of your biology. Sure. You don't know your family history. Sure. At all. Yep. You've gone from foster home to foster home to foster home.

41:36You might have had a history of abuse. You cannot meet the criteria. Because this might now become, this is all PTSD. Yes, yes. And because you don't know about your genetics, what's the biggest cause of ADHD? Yeah, genetics. You have no history of your biology. Yes. Right? Yeah. This is a very complex case now. Yeah. So this is where there's nuances. It gets a lot more tricky now to untangle these types of cases. Right? You have no informant reports. I didn't ask any of my family. I had no informant reports. Right? So you have no informant reports now. This is a very tough case. Okay? And it's hard for us as a clinician.

42:23Sure. Because right now, this is the diagnostic manual that we have. Yeah. And us in the industry recognize the drawbacks of this as well. There's no simple answer to this one. What I would say to a clinician is, and I know this is going to sound odd, then this goes with experience. If it looks and smells like ADHD, it probably is. And maybe those other things are... Dark quacks like a duck. Exactly, right? What's the worst case of assessing someone and recognising someone is ADHD? With other things. Yeah. So the last criterion, and this is very interesting, this, because you don't see this happening in many other conditions.

43:01The last criterion in the DSM criterion is, can this cluster of symptoms be better explained by any other condition? Is it? Okay. But that's almost saying that ADHD, by the way, mate, is the final resort, yeah, that you should be thinking of. It's the final thing. If you rule out everything else... It's the last resort. It's the last resort. Unbelievable. But it could have been the cause of all the other problems. Yeah. Right? Or it should maybe reword it to say, even if you think this is ADHD, is there any other conditions that you might be able to give advice on here at this point, doctor? Yeah.

43:40With your knowledge of a wider experience that might also help this patient. Yep. That would be more helpful. Yep. Where does autism, OCD, any other comorbs, where does that, where does like... So what it's trying to say is... Comorbs. Why am I, who am I? Comorbidities. No, but it's almost pushing you to sort of say, oh, if there's anything else going on, it can't be this. Yeah. Even though we know that this is a highly comorbid condition. That doesn't make sense in itself. A lot of these things are going to change. So anyway, coming back to this. So we've done painful, we've done persistent, it's supposed to be lifelong, pervasive.

44:16Pervasive means, does this occur in every domain? So does this occur at home? Does it occur at work? Did it occur at school? Does it occur with your employer? So a funny anecdote that I use with patients, one of the questions in the inattentive category is, do you struggle to pay attention in direct conversation? So what I will joke with a patient and say, not just with your partner, with everyone. I'm joking, but what I mean by that is, well, there are certain situations where everyone doesn't always pay attention. But if you're sitting in, for example, with your employer or in a meeting where you're meant to and you still can't, then that's a problem.

44:55Because then it's an inability question, which is what I'm now more interested in rather than a situational one. So is it pervasive? Is it occurring in different settings? You take those criterion. Now you look at the two sets of symptoms, and this is where the emotional component is completely missing, which I'm going to come to. So currently the diagnostic criterion is only looking at two sets of symptoms, which is really what they do in kids. nine inattentive symptoms and nine symptoms that come under hyperactive impulsive category of those nine in the hyperactive impulsive category six of them are hyperactive symptoms and three of them are impulsive okay so in the nine inattentive symptoms it's questions around attention concentration and focus yep it's questions around ability to organize which includes things like time blindness sure so now this is another thing if you just ask a patient what the the question on the thing is do you have difficulty with organizing tasks and activities that's not really what what's going on and this is what i meant about knowledge and experience the kind of questions you should say is do you struggle to regulate your time and scheduling What that means is, see a naive clinician will say, do you run late for appointments?

46:23No, I go there extra early. I'm two hours early. I'll do nothing before that appointment. Nothing. And I'll wait there for two hours. Because this is a regulation disorder. Now, some people call that time blindness. Really, you have difficulty regulating and scheduling time. you might be there way too early. To me, that's a problem in itself. Why are you there two hours early? Because otherwise I'll be late, doc. Yeah. Right? Yeah. So as a naive clinician, if you just looked at this naively and you don't understand how the brain of an ADHD person works, you'll say, no, they're not late. They're really early.

47:05Oh, they're super punctual. That's not the problem. Yeah, yeah, yeah. Right? It's a regulation of time that's the problem. So if I come to see you for an assessment, you have the benefit of the experience to not just look at the DSM criterion, right? And therefore you can... And not just me, there are many colleagues out there. But what if I want to go and talk about autism or there's other stuff going on, but I'm only down for an ADHD assessment? So in our private clinic, and I think this is also going to be rolled out in the NHS more as well with Right to Choose, they're going to start offering combined assessments.

47:45I think they're starting to recognize that there is an incredible overlap. The next area that should be offered will be specific learning difficulties assessments, dyslexia, dyspraxia, dyscalculia, because we see that as well as an overlap. So currently in the diagnostic criterion, there is no such thing as Ord HD. Really? No, there isn't. That's not a terminology. I didn't know that. No, there isn't. I knew that autism and ADHD together could be recognised from 2013, but not based on the DSM There's no term for that So when we do combined assessments in our clinic, for example, we have to do a separate ADHD report and a separate autism report Are you kidding?

48:30Yeah, because it's not currently there like that Now, again, this goes with experience, okay? How are you not so frustrated by this? It's so inefficient If you have both, which I do, they're going to present differently. And I'm going to give his name because I want to credit him, but there's a very big psychiatrist, Dr. Khuram Sadiq, who talks on this, right? And he called it order and anarchy in one individual. Fantastic. The ADHD brain is chronically understimulated and looking for stimulation. The autistic brain is almost not overstimulated, but sensory overloaded. right? And looking for calm.

49:12So that can present a bit differently. It's new and same. Yeah. Right. I'm both. So I want same, but I also want new. Yeah. And that type of assessment, I think needs a quite, to be frank, a skilled individual because you need to really have experience of both. Also, when you treat that patient, say you treat them with ADHD meds, their autistic traits become more prominent. Sure. So they'll start describing things like, I became more introverted actually. I don't like this. It's taken away from my personal. They'll say things like that. Also people with autism and ADHD, the data shows that they're much more sensitive to side effects of meds.

49:52Interesting. I mean, I'm not on meds. So they need a slower titration. That's interesting. They'll also describe certain signs like misophonia, sound sensitivity a lot more acutely. On medication? No, even without. Okay. So when you ask them a question about, are you distracted by environmental stimuli? They'll particularly, if you get into that, if you ask enough about that, they'll talk about, it's not just I get distracted by sounds. Certain sounds annoy the hell out of me. The person chewing their food. I just can't deal with that. Yep. It just feels like a drilling in my head. That's a different nature to an ADHD patient alone saying, oh yeah, I was just wondering what's going on over there.

50:32Yeah, okay. Yeah, yeah, yeah. It's not the same. Yes. Do you see there's nuances here? You cannot at the moment assess someone for ADHD and dyslexia in the same assessment. You can, but you would produce two different reports. Yes. So for example, I sought out an autism assessment and then eight months later, I sought out an ADHD assessment, which on reflection was highly inefficient from myself. So what I'm saying is that, so in the private clinic that I'm in, we do combined assessments. But how do you know? It's going to be introduced. No one said to me. Because we send out screening forms. So there are screening forms for autism as well.

51:11Okay. Right? So you have the AQ10, the AQ50, which is more detailed actually. And if you score above certain thresholds, it's recommended you have an assessment. Okay. Now the interesting thing that we often hear is, well, there's no treatment for autism, so why should I have an autism assessment? you might answer this better than me actually but i think it can actually be very helpful to understand why you are the way you are for anyone who watched it the other episode we talk about labeling in some ways can be helpful yes because if you start to understand what your traits are then you can actually maybe recognize them and dampen them a bit yourself or make the good ones stronger yeah i mean i don't see it as labels i guess i'm i'm consistently wanting to improve my life my families and the people i work with and my businesses and except i just want to improve the only way i know how to improve is if i understand and so why wouldn't i want more understanding about how my brain works like why wouldn't anybody want that to get maybe a bit better at the things i find challenging and be even better at the things that i'm really good at like that is a good thing i think this is particularly important recognition in kids yep okay because i think that if we can pick this up at a younger age we can put adaptations and encourage strengths from a younger age which then hopefully doesn't damage self-esteem later in life oh my daughter's autistic you ask her what it's like being autistic she's zero problems there's nothing wrong with being autistic yeah she finds things difficult she finds some things incredibly easy but there's no judgment or attachment to that word for her that's negative yeah because i've made it that way yeah yeah a lot of it's around what you just said parental counseling yeah because it's how it's framed exactly it can be the difference yeah i think Yeah.

53:08So with the nine inattentive symptoms in adulthood, you have to score at least five. Sorry, coming back to them. I didn't finish. So I said there are symptoms around inattention, concentration, organization, procrastination, forgetfulness, losing or misplacing bloggings, or just being forgetful with your routine activities. And then distraction. You have to score at least five out of nine to score in that category. For the hyperactive impulsive symptoms that's about physical fidgetiness restlessness struggling to remain seated which is again these are questions you'd normally ask in children wouldn't you yeah right that restlessness by the way in adults moves inwards and it feels like an internal restlessness sure a mental restlessness sure that energy shifts and then other impulsive symptoms struggling to not interrupting conversation, cutting up people maybe with their questions, and just general impatience and irritability.

54:09Yes. Okay, so you have to score at least five out of nine. Okay. You don't have to score in both categories, but you have to score in at least one. Yes. And it has to be painful, persistent, pervasive. Right. If you score in both, it's called combined type ADHD. Yep. If you score in just the inattentive category, it's predominantly inattentive subtype ADHD. and if you score in just the hyperactive impulsive symptoms, which is very rare in adulthood to just score in that, you see that more in children, it's predominantly hyperactive impulsive subtype presentation. Why it's called subtype presentation is because one thing the DSM does recognise is that this can present differently throughout your lifespan.

54:48So in childhood, you might have been the more hyperactive, you might become more inattentive in adulthood. It can change. So it does recognise that. Okay, that's good. and then the last criterion like i said is can this cluster is really better to explain anything else so that's the mad thing about this that is the mad thing and that's probably the one thing that i'm taking away from this of like well again it's constant reminder of we are building the plane while flying it we are behind you know we are like yeah this is fresh this is the new baby in research or any other analogy around still trying to figure this out and ultimately that therefore the message really to the public is it's not an excuse but it is an explanation it's a working process yeah of what is going on before we finish on this there's one big area which is not part of the diagnostic criterion which i want to mention here to the audience that might have not seen the last episode.

55:50Yep. Emotional dysregulation. There is no mention of emotional dysregulation or rejection-sensitive dysphoria in the current diagnostic criterion. And it's one of the most prominent problems in this condition, not just in kids, also in adults. Really debilitating. Well, then it's no wonder we've missed so many people. Exactly. So if it's not part of the diagnostic classification, they get diagnosed with generalized anxiety disorder, with treatment resistant depression, all these different things. They get stuck on antidepressants. I'm not saying antidepressants don't have their place. If they're used correctly, they can be very effective.

56:31If they're not, then you're just going to feel numb and full of side effects. That is a massive area that's lacking. So that's number one. We mentioned gender differences. Women will experience emotional dysregulation a lot more. Men might present with it a bit more differently with anger and irritability. Women may mask more. Masking means that they will put in compensatory mechanisms, work a bit harder to try and overcome their difficulties. And that leads to overwhelming exhaustion. So gender differences is one. Number three, all the studies that's been done on ADHD up till now have been done on hyperactive naughty boys.

57:12And there's not enough done on the inattentive females. Yeah. So that gets missed. And a good ADHD assessment, coming back to your original question, should be really holistic. Yeah. Look at all the other symptoms. Yes. Recommend on everything. Yes. Not just a tick box. Yes. And last one, tailor treatment according to the individual. Now, this one thing that's not enough in the diagnostic criterion is about severity. Okay. The guy that's coming out of the shower with the shampoo in the head, It might be a very different person to the lady who's now experiencing problems hitting perimenopause and menopause.

57:50You can't treat them exactly the same. No. And until we emphasize on how this presents differently as a spectrum, we're not going to tailor treatments appropriately. No, and the individual is difficult and more expensive and less efficient. And requires more training. Requires definitely more training because you've got more things to know because there's, guess what? there's more things to know about more people i'm so annoyed that we've run out of time because i know we're just scratching the surface but i guess what i'm taking away is we talk a lot of the hidden 20 about catching society up and we're doing that on an information level on bringing people experts etc in but it sounds like on a dsm on a clinician level on a diagnostic level assessment criteria.

58:42Like there's a whole load of catching up that needs to happen. Yeah, absolutely. And because it hasn't happened or isn't happening fast enough, we have missed so many people and we've missed adults and we've missed women, definitely. I mean, there's loads, isn't there? There's loads here. It's still a work in progress. It is still a work in progress. Last question, Shai. Would love to give you a second green dot badge. Support for neurodiversity. Who would you like to give it to? for any person who's watching this at two three in the morning in an absolutely desperate position because all of these things are resonating with them along with all the other videos that they've been watching go and seek help because this is manageable there's not a cure but this is definitely manageable you're doing the right steps initially in terms of what we call psychoeducation okay that's the first thing learning about what this is and what it is and what it isn't but then go and seek help.

59:36Don't just sit in despair. Don't procrastinate seeking help. This is for them. This is for them. Thanks, Shai. I feel like I'm going to be talking to you again. Yeah, really enjoyed hearing you. And I like the way you think. I like your brain. And I think this is great, really helpful stuff for our audience. So thank you for coming on. Thanks for having me.

1:00:05That's it for today's episode of The Hidden 20%. But just before you go, a favor. The Hidden 20 % is a charity and we do this to bring you the truth, the latest research and the real stories that matter. So if this episode spoke to you, then please hit subscribe. And if you can, donate via the link below. Finally, a big shout out to you all for listening and our brilliant team who make this all happen. Phoebe. Thank you.