JULIE: Welcome to Season 2 of ADHDifference. I'm your host, Julie Legg, ADHD advocate, author of The Missing Piece: A Woman's Guide to Understanding, Diagnosing and Living with ADHD, and an unapologetic doer of many things. This season, we're turning up the volume with a global lineup of brilliant guests bringing their lived experiences, insights, research, strategies, and resources. And of course, along with a healthy dose of humour and humility. Whether you're neurodivergent yourself or just curious, there's something here for every curious brain. Let's dive in. Meet Noemi Platania, a researcher and PhD candidate based in the Netherlands, studying ADHD in women and girls at the Expertise Center Adult ADHD in The Hague. Supervised by Professor Dr. Sandra Kooij and Dr. Dora Wynchank, her work focuses on updating the diagnostic interview for ADHD in adults, known as the DIVA-5, so it better captures the experiences of women and girls. I had the pleasure of meeting Noemi earlier this year after being invited to join one of many forum groups, a diverse gathering of people from around the world, where we shared our stories and insights to help support the ongoing DIVA-5 research. Welcome to the show, Noemi.
NOEMI: Thank you so much for having me, Julie. I'm happy to be here.
JULIE: It's fabulous. I've been so looking forward to this. [Yeah, me too]. Can you tell me a bit about yourself and your academic background, please?
NOEMI: Sure. So when I first started studying, I had all of this indecision that I just wanted to know more about everything. I wanted to know about literature and environmental science and sociology. And so I did a bachelor's in liberal arts and sciences. But I always had this sort of passion for psychology and especially clinical psychology, so I eventually specialized in that. Yeah and then came the next round of indecision of do I want to work as a psychologist or as a researcher? And I was able to actually combine those things for my master's degree. So I did a master's combining research and practice. And but I I pretty quickly realized that I just really enjoy this process of asking questions, trying to come up with answers, design studies around them. And so about two years ago now, I applied for a PhD in clinical psychology and ADHD and yeah, now I'm here.
JULIE: What inspired you to focus on ADHD in your research?
NOEMI: So my best friend has ADHD and she was diagnosed in her 20s. It really helped her to sort of understand herself better to know how to deal with life better. And in that period of course we were having all of these conversations about what is ADHD? How does it influence her behavior? So that really piqued my interest initially. But specifically diagnosing women came up for me a few years ago when I was doing a clinical internship at a mental health practice and I was in charge of the diagnostic process for a woman who believed she had ADHD. But it quickly became apparent that her symptoms weren't showing up the way they were supposed to. So she was working really really hard to mask and to suppress and not to display those symptoms. And just current... like the diagnostic tools that I was using didn't account for that at all. So, ultimately she didn't get a diagnosis, which was a pity because I think she really would have benefited from it and she was really struggling. And yeah, that was just getting the diagnosis and that really like... I kept thinking back to that moment in the months that followed. And I eventually I saw this job description that said 'improve ADHD diagnostics for women' and I knew I had to apply. And yeah, that's what I've been doing ever since.
JULIE: That's amazing. That sounds like a calling to me. For those who aren't familiar, can you explain what the Center for ADHD in The Hague does?
NOEMI: Yes. So, we are a combined research and treatment center. So some of my colleagues are clinicians, so they treat and diagnose adult ADHD, and the rest of us are researchers. So we have a special focus on sex and gender and ADHD, and also sleep and ADHD.
JULIE: Wow. Look, today we're really going to be chatting a lot about the DIVA-5. Yes. Can you explain what it is and how it's used in ADHD diagnosis?
NOEMI: Mhm. So the DIVA-5 is a semi-structured clinical interview. So that means that the interviewer has a good amount of freedom in terms of the flow of the interview and the exact way that the questions are asked, but the main questions are set. So those are taken directly from the DSM-5. So each item in the DIVA-5 is a symptom from the DSM and those symptoms are assessed using behavioral examples. So for instance, if I wanted to know whether you fidget assess examples like 'do you play with your hair' or 'do you play with your jewelry or with a fidget toy'. And that's how we assess is a symptom there or not. And the DIVA is translated into over 30 languages, so it's used around the world. And in some countries, including the Netherlands where I live, it's actually pretty much the main instrument that's used for diagnosing ADHD in adults.
JULIE: And my understanding too is that it's solely for ADHD. It's not looking for any other comorbidities?
NOEMI: No, it's specifically a tool for ADHD. And so how do you hope that your research can adapt or improve the DIVA-5 especially when it comes to assessing ADHD in women and girls? Yeah. So I mean you know we hear the story all the time right, like it came up earlier. It's like the story of a woman who gets diagnosed in adulthood often after years of struggling, and associated shame and guilt, and there's not a lot of research on this so we don't know for sure why this is happening. But our hypothesis is that ADHD in women and most likely also non-binary people and transgender men even though there's even less research on those groups. But that ADHD in these people actually looks slightly different and that current diagnostic tools weren't designed with that in mind. And that's because those tools were based on research that included almost exclusively male participants. So what we hope to do with our studies is we want to really look into the manifestation of ADHD in girls and women and then tweak the DIVA accordingly. So you know masking came up earlier. As women were not expected to fidget or be hyperactive or be messy or interrupt people. And so, women with ADHD work a lot harder to suppress those symptoms and to mask them. And that's one simple, maybe not simple, but sort of concrete straight-forward way that we could adapt the DIVA-5 for women.
JULIE: Just a quick question on the DIVA-5. So, you had said that it was mainly based on the assessment of men, boys. How long ago was it compiled?
NOEMI: How long ago? So initially the first version was actually called the DIVA-2. So, confusingly enough, but so the DIVA-2 came out in I believe... I mean this was before my time, but I believe it was 2007. So at the time it was based on the DSM-4 which actually didn't take adult ADHD into account. And my colleague and supervisor Sandra Kooij, along with a group of clinicians at the time, developed the DIVA-2 because there actually wasn't much of a... there weren't a lot of options for clinicians who wanted to assess adult ADHD. It's kind of a new thing. Yeah, so that was in 2007.
JULIE: And so much has evolved, hasn't it, in the past decades to really shed some new light on it all. So with regards to your research, can you tell me what methods are you using in your research?
NOEMI: So we're trying to basically combine as many different methodologies and like sources of information as possible. So we are conducting a systematic review of existing scientific literature on the topic. We also conducted a study in which we looked at existing patient data on the DIVA and looked at gender comparisons there. And then over the summer we ran studies. One of them was an online survey study with researchers and clinicians and people with ADHD to ask them directly how they think the DIVA-5 should be improved. We also repeated the process with online focus groups where you of course were one of the participants. But so now we are kind of trying to synthesize all of these different sources of information to create a version of the DIVA that does justice to these women and girls.
JULIE: And a lot of work has gone into this, and still is with your analysis of all the data that you've collected. When do you anticipate the research will be complete and what are the next steps once your findings are published?
NOEMI: Yeah, that's a good question. We certainly still have a bit of a journey ahead of us. So currently we're working on the very first draft of the new DIVA. We're aiming for that to be done around the end of the year and then we are still going to share that with our participants and get some feedback, get some more ideas. Then we have to implement that feedback and then the new DIVA still has to be validated and translated. So there's all of these steps still ahead. But I would say at the latest in like... I would say two years from now it's going to be out there and available for everyone to use.
JULIE: Wow. Wow. I bet there'll be lots of celebrations around the world for an improvement on it because so much has changed and as I said before over the decades, but even more recently about understanding girls and women and how it presents. Very exciting. Have you noticed are there any key differences between what you've seen in how ADHD is handled in the Netherlands compared to other countries?
NOEMI: Overall I would say we're quite lucky in the Netherlands. Of course there is still stigma surrounding ADHD, but it's probably less stigmatized than in many other countries. We have a lot of different treatment options available for patients, and treatment is relatively easily accessible. But there's of course always room for improvement. And I think especially when it comes to the treatment of women and non-binary people and other minorities, there's certainly still a lot of work to do.
JULIE: Absolutely. Going back to the online forum which I was involved in, there was a difference between some of the cultures too on how ADHD particularly in women is presented. It is. It's an interesting thing because if the DIVA is to be used worldwide there's the cultural differences too to be uncovered. So you've got quite a job ahead of you to make it fit everything.
NOEMI: Mhm. Yeah. And that's actually... I mean we're only just now starting to look into the data, but the cultural issue was one of the main things that was brought up across all of the groups. We think that's going to be tricky because there's only going to be one DIVA of course, but how do you make sure that that's able to cover essentially most of the world?
JULIE: Yes. You mentioned before it's up to the assessor to use that that as a guideline. So there is some ability for them to adapt sometimes.
NOEMI: That's going to be an important part I think. Yeah. Yeah.
JULIE: Awesome. Awesome. And so what's been the most challenging part of your research journey so far and also the most rewarding?
NOEMI: Well, most rewarding I think for sure has been the collaboration. You know, we invited like for these studies over the summer, we had people from all over the world. I mean, I haven't looked at those data yet, but we certainly had more than a dozen countries involved and people from different backgrounds and sharing different experiences. And I was the moderator for the focus groups. So I really just got to sit there for many hours and listen to all of you brilliant and interesting people talk and that was so nice and I really learned a lot in that process. So that was for me definitely the highlight. In terms of most challenging maybe actually the pace of research because you know when you're sitting there and all of you are sharing your passion and like you want to enact change, like it makes you want to act. It makes you want to... it's like, let's start a feminist revolution. Let's tear the system down and start from scratch. But I realized you know, that's not how and for good reason. That's not how research works. We have to be slow. We have to work on what existing evidence. But yeah, there's definitely some frustration that comes with that sometimes.
JULIE: I think too, your ability to note take and make sense of many adult women with ADHD passionately sharing their thoughts. And when we talk about over-talking and interrupting, you know, well done on gathering so much data in a very, condensed space of time. Many voices.
NOEMI: It's incredible how much information we got in. I mean, we had one hour per session, but you know, there was never a silent moment. Like, people were sharing just so much. And I mean, that this topic means so much to so many people. So yeah, it was... it was such a pleasure.
JULIE: And I'd just like to ask you, as I like to ask all my guests, if you could give one message to people currently struggling to get a diagnosis or to be understood, as a researcher, as an advocate, what would it be?
NOEMI: That's a tough one because that's just such a difficult position to be in, right? Like as a society we're not very kind to neurodivergent people even if for people who are diagnosed, but then add to that the difficulty of not getting the understanding and the recognition that you need. But I guess I would say there's hope. There are all of these researchers and clinicians and advocates that are working really hard to try to improve the situation. I mean I met many of them through the study and it was just really nice to see how dedicated people are to this cause. And of course changing one diagnostic tool is not going to drastically improve the situation overnight. But I do hope that it can be part of an overall trend where as a community we start to realize the huge impact that factors like sex and gender play in ADHD diagnosis. So, I guess the message is there's hope. There's hope.
JULIE: That's fabulous. Well, this has been so informative and I really appreciate your time. Thank you for all the amazing work that you have done and continue to do. And it's bright horizons for those, you know, requiring the DIVA-5 and beyond. And yeah with your, hopefully, improvements. So, thank you so much for joining me tonight.
NOEMI: Thank you so much for having me.
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