Leading Psychiatrist: How To Process A Late ADHD Diagnosis, Grief Is The First Stage!

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0:43What we have with regards to assessment tools, with regards to the understanding, is all based on a male-centric presentation. Dr. Asad Rafi is a leading psychiatrist. Who's assessed thousands of women for ADHD and autism. He's here to explain how to process a late diagnosis and how to reach your untapped potential. Individuals with ADHD are constantly striving for validation from the outside world. And I say before you can get that validation from others, you've got to seek it within yourself. And I think that's one of the toughest elements of this particular condition. When someone says to me, how would you describe someone with ADHD?

1:17I say they're emotional people.

1:18Dr Asad Rafi:Why do you think women have been missed for so long in the ADHD space? If we look at...

1:28Dr Asad Rafi:Dr. Asad, welcome back. Thank you for having me back, Alex. Huge privilege to have you back. And before we start, I want to address the elephant in the room. I'm going to put you on the spot a little bit to start. One of the criticisms that many people in the ADHD space have had in the past is that it's not okay for men to discuss female ADHD. What's your stance on this? Is it okay for us two men to sit here today and discuss the struggles that women have with ADHD? It's a recurring conversation that I see in forums. I see it online. And men like you and I do attract that criticism. And what's the agenda?

2:10What's behind this? Is it a commercial agenda? Are they doing it for the likes? but I think we've got to be really clear about what that agenda is and certainly from I can only speak for myself certainly from my perspective it's sharing that knowledge it's sharing that understanding with people who have been misled who have not been understood who have not been validated for for decades and ultimately no man should claim any form of authority on women's mental health or women's health in general. And we should act as advocates in the best possible way and not be virtue signalling. We need to be using these platforms in the best possible way to help others.

3:01Dr Asad Rafi:The late diagnosis crisis that is happening with so many women having been let down for so long, I truly believe having spoken to so many women on this podcast is heartbreaking. being misunderstood being othered being genuinely feeling like they're broken for most of their life is truly heartbreaking in your practice do you see many patients that stick with you as being truly heartbreaking absolutely and the there are there are common themes people who have not been listened to they've not been heard they've not been understood and as i said they've not been they've not been validated and that leads to almost a chronic distrust of doctors like me and the first piece of work I've got to do is to try and rebuild that trust and I often say that there's nothing new that I'm going to tell you today my job is to join those dots up is to help you to understand how everything connects and ultimately to help you to understand yourself better.

4:10So yeah, absolutely. We're in a situation where we're seeing many women who come to our practice, who seek out that help and support because they've not been given the right answers in the past.

4:22Dr Asad Rafi:If you were to think of one standout patient who you saw and you were truly heartbroken by, could you think of one? I can think of many. And I think one of the most recent cases that I'd seen really brings home to roost a lot of the issues that women, not necessarily with ADHD presented with, but just women in general tend to demonstrate, which is significant sacrifice. And this particular case has sat with me on a personal level since the moment that I met this family. And it was a young boy who had been brought to clinic with mum and dad to understand whether or not he had ADHD, which he did.

5:15And mum kept intimating to me that she wanted some time by herself. And I wasn't sure as to what that conversation was likely to be about. I thought it may well be about something at school. what she did say to me was when I did have the opportunity was that she was in a situation where she may not be here for much longer, she had a terminal illness and I think what was really obvious at that point for me was understanding that sacrifice that she was making and she wanted her child to be in the best possible situation and I think what she really encompassed was motherhood and women and ultimately that they have those dual roles in life alongside their work, alongside everything else, there's constant battles and ultimately her biggest worry and concern wasn't herself, it was for her child but then I also had a partner, I also had a husband who was really struggling and I suspect also had ADHD.

6:33For him to understand himself and his child whilst at the same time facing potentially losing a partner was absolutely heartbreaking and it's difficult to even talk about it now. Dare I say I've had that permission from the patient themselves or the patient's mother for me to share this with you because I thought it was really important for me to to bring that home to you today and then to talk about it.

7:03Dr Asad Rafi:Truly heartbreaking, Asad. Thank you so much for for seeking permission and for sharing that. I can see you're getting emotional just sharing that story and it's truly heartbreaking and when you experience devastating stories like that how does that tie into your mission your personal mission within the adhd space i think i've been blessed with the opportunity that my own parents gave me which was they educated me they gave me that platform to be able to learn to understand and i have a duty to share that with others got to educate people got to empower people and my ultimate mission again which came from my mother was to help those that were less fortunate.

7:53Not everyone can afford private services. And one of the small things that we will do is to give back. We all need to give back in whichever way we can. We have a not-for-profit service for children who can't afford ADHD assessments. And ultimately what I'm trying to do there is to help level up that disparity that exists but we'll also see any of the teachers within that particular school as well and for me any provider needs to follow suit and i'm more than happy to hear from anyone you know to collaborate on a mission like that and i'm going to use this opportunity to share that with you know with the wider audience you're truly doing incredible work and i share so much

8:41Dr Asad Rafi:of that mission with you you were absolutely incredible last time you came on i think it was about eight months ago onto the podcast. And I think it's important to ask, have you had any epiphanies since you were last on about ADHD and some of the challenges that come with that? I think I have an epiphany almost every day. There is so much information that is being shared. And we're constantly looking at new research. We're constantly trying to understand how these different elements start to intersect with one another. And we keep going back to understanding how do we frame ADHD from that traditional, typical model that we all have an understanding of.

9:36And coming to a point where we start to understand it as a brain-body condition. super complex and invariably we look at seven or eight different elements and we can almost build a profile especially when it comes to you know adhd in in women we can almost build a profile by looking at their physical health symptoms because we don't see that pattern existing anywhere else but also we see the connection with sensory sensitivities and this is this is the element which really captures my imagination because we see that bridge between physical and mental i see it as as being that sensory element especially something called interoception i'm not sure whether you've come across that term before no i haven't so if we typically we think about sensory sensitivities with respect to our five senses.

10:42And when we look at the wider scope of understanding sensory sensitivities, there's something called alexithymia. So please don't feel flattered that they've named it after you, Alex, right?

10:55Dr Asad Rafi:I have heard of that. Yes, you have influence, but not to that degree. Okay, so alexithymia is certainly very much prevalent within neurodivergent individuals. And it's when you struggle to understand or recognize your emotions, you struggle to process them. You struggle also to articulate them. interoception is when you struggle to recognize bodily signals and correlate with emotions so it's things like knowing when you're hungry or knowing when you're full it's knowing when you're tired or fatigued it's even knowing when you need to go to the loo or when you need to hydrate or even when you're in pain.

11:45So lots of these signals can often be delayed or not even picked up in many neurodivergent people. So when we start to see challenges like obesity, type 2 diabetes, disordered eating patterns, it starts to make sense. You see that correlation. You start to understand more about sleep issues. Then you start to understand, is that child actually being disruptive in the classroom who wants to who's always putting his hand up and asking to go to the loo or does he truly have a difficulty okay so these are the things that we're understanding more and more and they become so much more relatable for people away from that traditional model so we incorporate a lot of this understanding and you know in our approach to assessment i think it's really important people start to understand that because they relate to it a lot more than How does that tie into stress and other necessities like sleep?

12:44If we think about alexithymia and the concept of stress and how that might manifest, there's lots of different elements to how stress presents. People may not be able to recognize it. They might not be able to detect it or even process it, let alone communicate it. if we look at stress physiologically and we look at a physiological measure like heart rate variability that's your heart's adaptability between consecutive beats and that correlates it's probably the best as i said it's the best marker of stress that we currently have and for many people with adhd that i see we will ask this question if they track you know you using wearable trackers will often see that they have lower hrv which indicates that your body is in a state of stress where they get really confused often is and you know we see this anecdotally is they'll say well you know my my phone's telling me that actually my metrics are really good i don't feel that way and i said that probably reflects that delay that occurs due to interoception and say right there's almost a lag of about a day or maybe even two days before that occurs so that's a really interesting finding that we're seeing on a regular basis so by looking at the metrics you can almost predict what's happening or what's about to happen so interesting i had a

14:22Dr Asad Rafi:brilliant psychiatrist on from america dr jacob and he said adhd women are the most stressed group of people on the planet. Do you agree with that sentiment and why do you think that might be? Women with ADHD, it's not just ADHD by itself. And if we look at the number one factor that we certainly saw from our research, we examined responses from over 1 ,300 women from the age of all the way up to 65. And the independent factor that drove ADHD symptoms getting worse and subsequently increasing mood, emotional symptoms, but also addictive behaviors was stress. And we've got to understand why. Women face lots of challenges, lots of transitions in their life, further complicated by the hormonal impact as well.

15:26If we think about their role in society, and if they're working, on top of that, they finish work, they're at home, they're the matriarch, they are the leaders of that household. And it never stops. They never complain. They just manage, they just cope, they just survive. And I don't know how they do it. I can't relate to that. I can't do it. And I have to admit that. I can go to work. You can be there for hours. Managing the household, doing everything else is where I'll struggle. And this is where there's a fundamental difference. So absolutely would agree with Dr. Jacob.

16:11Dr Asad Rafi:Likewise, and you made the point incredibly well. 85 % of the people who listen to this podcast are women. And I feel like they listen because after too many years of being let down and missed, they are finally hearing people like yourself explain their lives and adding color and context to so much of their past, which without that is just a void of any understanding. Why do you think women have been missed for so long in the ADHD space? If we look at ADHD, the way it's presented, the way we as doctors and professionals are taught this particular subject, it's archaic. Look at the diagnostic classification systems, look at the guidelines.

17:02Respectfully, well, it's not respectful, I'm being very disrespectful here now. the female presentation of ADHD doesn't even resemble what it says in the NICE guidance or within the DSM-5 criteria. So how is a clinician who is effectively using a checklist going to be able to diagnose any woman? They're going to struggle. You know, we've got these preconceptions, these misconceptions. What we have with regards to assessment tools, what we have with regards to the understanding is all based on a male-centric presentation. It does not apply to women. It certainly doesn't apply to people of colour either.

17:54So we've got a lot of work to do. Do you think women deserve an apology from the medical community? I'm going to answer that in quite a controversial way, which is to say no. Because I think words are cheap, and we need to demonstrate action. We can talk about things all day long, but actually what we need to do is to engage as a community. We're a very fractured community within the neurodivergent community, I have to say that. we have to unite and we have to have a common goal and a common purpose and therefore action is far more important i think that's the best way of demonstrating any form of remorse i spoke to a

18:40Dr Asad Rafi:woman at an event recently and she said she was incredibly angry incredibly resentful because she felt like she had wasted so many years to feeling misunderstood people just didn't get her she looked back after her diagnosis and she understood why that relationship was so bad. She understood why that particular job wasn't right for her. And she felt so mad at one of her doctors called her crazy. She shared with me and she was so angry. She got to 55 years old and numerous appointments, anxiety diagnoses. She was so resentful. Do you think generally women should be feeling resentful? Do you think they deserve to feel resentful?

19:22They have every right to feel resentful for the reasons that you've just described there, because their condition and their presentation hasn't been understood. And I think we're putting a lot of pressure on people like teachers, parents, even if we look at primary care, GPs, who, dare I say, are tasked with trying to understand. And they don't realize this. You know, I've had a cohort of GPs that I've just trained recently. And the first question I asked them is, how many people do you think you see with ADHD on a daily basis in a clinic? And out of 40 people, let's say, for example, on average, they'd say about two or four.

20:07Once we'd done the training, once we'd helped them to understand the emotional presentation, the physical presentation, by the end of those two days, they were like, oh my God, this is more than 50 % of our caseload. That's how significant it is. Now, they are the people who are ultimately the gatekeepers. That's where ADHD needs to sit. We need to be investing that time in helping them. And that resentment is going to come from the fact that their condition's not been fully understood. They don't present typically, as I said before, as the DSM-5 criteria describes it. It's more internal, it's more emotional, it's more physical in its nature.

20:56And therefore, misdiagnoses happen, the wrong treatments happen, and therefore there's going to be that chronic distrust, and therefore resentment.

21:08Dr Asad Rafi:in your last episode dr asad one of the top comments on youtube was that they felt this woman felt like she had a lifetime of missed opportunities because of how late she was diagnosed do you see that sentiment in your practice when women come to see you we do and i I think I can understand that particular comment. However, what I will say is this. Many of the people that I see, many of the women that I see, have actually been really successful. But it's important how we define success. Success doesn't always come from your bank balance or it doesn't come from your occupational achievements or your academic success.

21:58look at your relationships, look at friendships, look at yourself as a parent and stop giving yourself such a hard time. You know, those of us who have ADHD have huge, huge expectations of ourselves. Forget the wider world and there's huge expectations there as well, but we have huge internal expectations of ourselves. We've got to manage those. But going back to that question, yes, many people will say, you know i haven't achieved my true potential i haven't achieved what i felt that i was capable of achieving and i need to understand why and that's how we frame the reason why they come to see us and and that certainly becomes the starting point to that conversation i think what's

22:45Dr Asad Rafi:heartbreaking is i speak to many women with adhd and they say often that they feel like they can do They've got the skills, they've got the capabilities to start a project, but it's this fear of criticism, this fear of putting themselves out in the world that exposes themselves to a potential rejection. So it feels safer in the moment to not even bother, to not even buy that domain, to not even apply for that job, because if they just stay at home, it's safer and it protects them. When you hear ADHD, do you sometimes think untapped potential? There is. And as I say, there are inherently super capable individuals.

23:25ADHD comes with significant strengths. I hate it when it's framed as a superpower as such. I don't see it like that. I don't see it as a disorder. I see it as a state of dysregulation. It's more like this. It's inconsistent. It's variable. Depends on the context. Depends on the situation. and the problem that we then have is you know that untapped potential that ability is certainly there it's not being channeled in the right direction at the best of times and this is what we've got to help people understand you know that they inherently do have those skills they do have those abilities actually they've not been given the opportunity to demonstrate them a quick word

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25:23Dr Asad Rafi:What are the most debilitating parts of ADHD for women? I'd like to say there isn't one single feature. It's a combination of things. Dare I say it, on that long list the core adhd symptoms are usually right at the bottom as i said before the number one element seems to be the physical challenges and the physical difficulties that combination of challenges with hypermobility connective tissue disorders dysautonomia and there's one feature that really stands out with dysautonomia and this is the part that really hits home and I'll say to I'll say to a lot of the women that I see I can almost predict that you've got ADHD when I ask you this question so what happens when you go from sitting to standing or lying to standing really quickly do you feel dizzy or light-headed they're like oh my god yes I said do you bruise easily do you have cold or heat intolerance do you have Raynaud's type features cold tips of your fingers or toes and they'll say yeah absolutely so would you realise that a lot of those features especially the going from sitting to standing that slight feeling of dizziness which corrects within seconds or microseconds correlates almost directly with that internal sense of inner restlessness, which I say is that somatic internal hyperactivity, which a lot of people think is anxiety.

27:03So we see a lot of the dysautonomia features, but also the hallmarks of stress, chronic inflammation, histamine hypersensitivity, which is the whole plethora of symptoms, symptoms, a constellation of symptoms like skin-related issues. And women will say it flares up from time to time. Psoriasis, eczema, acne, itching, respiratory issues. You can see it from their history. Asthma, hay fever, allergies, headaches, migraines, brain fog, fatigue. I've been diagnosed with fibromyalgia. I say, have you? Okay, let's try and understand this in the context of everything else. And then the heavy periods, the cramps, even down to visual challenges and difficulties.

27:59They will talk about gut health problems, IBS-type symptoms. We see all of those elements. That then takes precedence over everything else. And let's be honest, when it comes to a hierarchy credibility wise physical health symptoms trump mental health symptoms that's what happens in society doesn't it you can measure them you can see them can't measure or see mental health issues so therefore the most debilitating element becomes this whole constellation of physical health symptoms but alongside that then the emotional challenges and the emotional difficulties, which are then significantly linked to addictive behaviors.

28:48They then become the headlines. And as you can imagine, you're looking at those three elements alone, alongside then independently, hormonal fluctuations, sleep, stress. They tick every, and it's not a box ticking exercise, but we're going into all of that detail and understanding all of those things. and I often say we've not even talked about ADHD yet so you can imagine all of those things you know we will address then we'll talk about the ADHD and it's like wow now it makes sense

29:21Dr Asad Rafi:so interesting how does it all tie into emotional sensitivities because I feel like so many people with ADHD they hear comments like why are you doing it like that stop doing that that's a weird way to do it, even though the way that they're doing something might be right and effective, but it's just different. How might exposure to so many corrective messages like that have an effect on someone's emotional sensitivities? These are, what you've described there, are often what I frame as these micro-traumas that continue to accumulate over a period of time, from childhood all the way through to the rest of your life.

30:06And it evolves, it changes. First it's in the classroom, then it's in a relationship, it's in friendships, it's at work. And you've got that external criticism, which is significant. I think one of the things that is certainly even more powerful is that internal sense of self. And individuals with ADHD are constantly striving for validation from the outside world. And I'll say before you can get that validation from others, you've got to seek it within yourself. And I think that's one of the toughest elements of this particular condition. when someone says to me, how would you describe someone with ADHD?