Episode 5 – Talking ADHD

Hosts Dr Lisa Interligi and Kristine Christopoulos chat with Professor Mark Bellgrove about ADHD – what it is, how the condition is diagnosed, gender differences and heritability. Mark is Director of Research at the Turner Institute for Brain and Mental Health, and a Professor in Cognitive Neuroscience at Monash University.

Speaker 1: Welcome to Loop Me In, the podcast community for parents and carers on raising children with disabilities. Join presenters Dr. Lisa Interligi and Kristine Christopoulos and their guests in sharing experiences, information, and support ideas to help children with disabilities flourish. Loop Me In is brought to you weekly on platforms like Apple Podcasts, Spotify, and Stitcher, to name a few. You can learn more, connect to the Loop Me In community, and listen to more episodes on our website, loop-me-in.com.au.

Kristine Christ…: We are keen to talk with Professor Mark Bellgrove today on our podcast. Mark is the Director of Research at the Turner Institute for Brain and Mental Health, and a professional in cognitive neuroscience at Monash Uni. Here, he leads a team studying the biological basis of attendant cognitive control. He is the forefront of international efforts to identify genetic risks in ADHD. Mark, welcome to our podcast.

Professor Mark …: Hi. Thank you for having me.

Kristine Christ…: I guess the first thing maybe some of our audience doesn’t know, explain to us what ADHD means.

Professor Mark …: Sure. Yeah, look, I think it’s one of those terms that you often hear a lot about, but it’s good to get down into the nitty-gritties and talk about what it is, and perhaps also what it isn’t. Attention deficit hyperactivity disorder is a neurodevelopmental condition, meaning its onset is early in life, as for a range of other neurodevelopmental conditions. It’s really defined or diagnostically it’s defined by two main symptom domains. One is inattention and the other is a dimension known as hyperactivity-impulsivity. Inattention is probably the types of things that you might think about. The child might have problems paying attention or concentrating for any length of time. They might be distractible, their attention might be easily caught by things in their periphery. They might not do well in cluttered environments, for example.

Then hyperactivity-impulsivity, the hyperactivity part of that is a child who is sort of almost constantly on the go. The term can be often as if driven by a motor, that the impulsivity can be has trouble controlling their actions. They might blurt out answers in class. They might interrupt people constantly. They might get themselves into trouble by doing actions because they haven’t thought through the consequence of that action. These symptoms need to exist in a persistent form. Then they need to exist across multiple settings. It can’t be that they just are there at home, but at school the child doesn’t display any of these.

The most important thing I think for your audience to understand is that they need to be impairing. We can all have some symptoms of ADHD if we do a checklist that you might see on TikTok, for example, many of us might score up. But really, the core for diagnosis here is that those symptoms are present, and for ADHD we have to have six out of nine of the symptoms in either inattention

and or hyperactivity-impulsivity. But, the point is that those symptoms have to be caused having a real functional impairment or a real functional consequence for the child. They have to be really struggling in the school area, for example. In the home they can, obviously these symptoms are causing a lot of functional impairment.

Without impairment, there can be no diagnosis of ADHD. We really want to emphasize that, because I think people forget that with the symptoms, there has to be impairment as well. It’s the impairment that we’re particularly worried about. Right? Because we want the child to be doing better in their life, coping better, performing well, et cetera. Symptoms in and of themselves aren’t necessarily a problem. They can be a trait like many other types of personality traits that humans have. But, when they become impairing and a problem for the child and the family, that’s when we need to worry about them.

Dr. Lisa Interl…: Do you find that ADHD sometimes accompanies other neurodiverse situations?

Professor Mark …: Yeah, or conditions, sure. Yeah, that’s known as a comorbidity. Concurrent conditions that exist within the one child. The usual phrase here, Lisa, is ADHD always brings a friend, and actually comorbidity is the rule rather than the exception for ADHD. In childhood, the most common comorbidities or co-occurring conditions, for example, some of what are known as disruptive behavioral conditions, opposition defiant disorder, conduct disorder, autism spectrum disorder can be very common. Sometimes OCD, sometimes Tourette syndrome, for example. Yes, other neurodevelopmental conditions frequently coexist. Also, the learning disabilities, for example, dyslexia and other forms of learning problem can be quite common in kids with ADHD.

Kristine Christ…: It is a diagnosis most common and increasing in children. However, we’ve found in the last decade there’s been an increased amount in adults. How do you deal with someone that eventually finds out that they have ADHD as an adult?

Professor Mark …: Yeah, look, it’s a really topical point of discussion that, right? Why are we getting this flurry of adults who are coming forth and a lot of celebrities coming out, particularly women at the moment, declaring that they’ve struggled and finally got a diagnosis of ADHD. Look, to my mind, this is a positive development. Currently, we feel, based on the data that we do have, we need more data, but we feel that adult, ADHD is probably at this point underdiagnosed in Australia and undertreated in terms of the number of scripts for medicine that are written. The worldwide prevalence for adult ADHD is about two and a half percent of the population. At the moment in Australia, we think diagnoses are sitting under that. The childhood prevalence, worldwide prevalence is about five and half percent, say. In Australia, we’re sort of hovering around that level of diagnosis. We’re pretty good at detecting kids with ADHD.

As to why or how you deal with a diagnosis in adulthood, the manner in which you make the diagnosis is pretty similar to childhood. It would be a clinical interview. There must be an interview conducted with a specialist, that could be an adult psychiatrist who specializes in ADHD or a psychologist who specializes in ADHD. Again, there has to be functional impairment attached to those symptoms. That might be in the workplace setting, the home setting, wherever it might be.

Ideally, there’ll be a historical record showing that that person really had struggled with symptoms of ADHD, even if they weren’t detected way back when into their childhood. Many clinicians will ask, if possible, for the adult to bring school reports. If there is a history that can be brought to bear there, that would significantly aid the diagnosis in adulthood. Sometimes even if the parent is still around, mom or dad might be asked what the person was like in childhood. You’re trying to bring as much collateral evidence, I guess, to that diagnosis in adulthood. We want to obviously do it very thoroughly, do it very rigorously, but also we want people to be able to get the help if they need it.

I guess the other element that I guess is coming into focus a lot is why women particularly are coming forward in adulthood. I guess the point there is that, in childhood, the number of boys diagnosed compared to girls is in favor of boys by about two to one. Roughly about twice as many boys are diagnosed as girls. We think that’s probably because the presentation of girls is a little bit different in childhood. It’s not necessarily the outward hyperactivity that you would associate with the child. It’s not necessarily the disruptive actions that bring the child to the attention of the teacher, et cetera. Girls can tend to be a little bit more inward in their presentations that may present very similar to anxiety.

We think what likely happens there is across development, and we don’t know fully, but the onset of puberty, for example, may be a bit of a trigger that starts to unmask some of these symptoms that the girls are experiencing. Then as demands start to pile on with adolescence, more schooling demands, et cetera, the girls can often report that they’re just having a lot more difficulty coping. Then as you both know, both be mothers yourself, as you get into adulthood and you’ve got even more pressures piling on, kids and work and all the rest, it can all start to unravel a little bit for women who have ADHD. That’s probably where they’re coming forward and trying to seek out help.

They might report then that they’ve always struggled, though never declared it. They’d always struggled, but they couldn’t put a name to it. In adulthood here, they’re presenting with the symptoms of ADHD, and often feeling pretty regretful that they’ve had to struggle through their whole life with this condition, and I guess regretful that life didn’t necessarily need to be as hard for them as it has been. Diagnosis and then receiving some treatment can often be this big change point where, yes they do better, but they also often can have this period of regret and grief for what could have been and a life that could have been easier. That can often occur at the point of diagnosis.

Dr. Lisa Interl…: Do you think that maybe the comorbidities are different for boys and girls, and maybe that’s why the boys are diagnosed more frequently than the females?

Professor Mark …: Yes, yeah, that’s entirely possible, Lisa. The presentation in girls can be a bit more anxiety and depressive symptoms related, which of course may be the symptoms that get treated rather than the ADHD per se, whereas boys, it can be a little bit more about impulsivity, et cetera. But look, to be honest, we need many, many, many more girls and women involved in our research studies because the samples on which the findings are based have been very biased towards boys and men. We need a much bigger push to get girls and women across the lifespan involved in studies.

Dr. Lisa Interl…: Yeah, for sure. We interviewed somebody last week, didn’t we, that had ADHD herself, her husband had ADHD, and children that also had it. She was diagnosed as an adult, and I think that gave her insight for her children as well. Can you talk about the genetics involved? Because I also know somebody through work that has a husband who’s ADHD and her child has ADHD as well. Is that something that’s common?

Professor Mark …: Yeah, look, ADHD is a highly heritable, heritable meaning it runs in families. It has a genetic origin. It’s a highly heritable condition and I often use this as a form of myth busting, because there’s some people out there in the community who don’t necessarily believe in the diagnosis. But if you actually look at the data from lots of large twin studies, including some done in Australia, two identical twins, if one has ADHD, it’s highly likely that the other will as well. The heritability estimates for ADHD are very similar to other serious conditions such as autism or schizophrenia. But of course, certainly the public discourse has moved on to acknowledge that there can be biological origins for those conditions. But for ADHD, sometimes people still struggle to realize that.

Yeah, we do know it’s highly heritable, and we also know now from large scale international studies, some of the genes that are involved in predisposing to ADHD. ADHD is what we call a complex trait or a complex condition, which means it’s not due to one single gene. Some of your listeners might be familiar with single gene disorders. For example, Huntington’s disease is a disorder that arises from mutation in one gene. In ADHD, it’s not like that. It’s many, many, many, many different genetic variants that sort of aggregate or add up to increase your risk for ADHD. That’s also true of many other traits and disorders that we study generally.

Kristine Christ…: I feel like we could talk to you all day. But, can you explain to us some of the projects you’re working on at the moment?

Professor Mark …: Sure. Yeah, look, so I guess there’s two strings to my bow as it were at the moment, because there’s the research that I work on at Monash University, and then in another aspect of my life, it’s work I do for the Australian ADHD Professionals Association. I can tell you a little bit about both. The work in our lab is very much focused on trying to advance our understanding of the genetics and neurobiology, and I guess cognitive and brain networks that are involved in ADHD. One of the things we’re quite excited about at the moment is that we have derived a stem cell line from people who have ADHD. The point of this is that we can start to get a handle on what’s going on within the neurons in the brain of folks with ADHD.

We had some families who very generously gave some blood and were happy to have stem cells derived, which we did. Now, most recently in the lab, we’ve been able to differentiate or turn them into dopamine neurons, and now we can start to study whether those dopamine neurons from people with ADHD might be different to people who don’t have ADHD. The reason that’s important or interesting, is that the medications we use to treat ADHD are primarily ones that act on the dopamine system in the brain, but we don’t have an objective evidence that dopamine neurons in people with ADHD are any different to people who don’t have ADHD. By building this stem cell model and this dopamine model, we can start to explore that type of hypothesis. That’s work that’s being done in my lab by a very talented PhD student by the name of Adafer and my longtime colleague, Dr. Zara Howie, who manages our genetics lab.

In other work, we’re starting a trial to see whether kids who have both ADHD and autism respond in the same way to stimulant medications that are routinely used for ADHD. Lots of kids who have the comorbid condition do take stimulants, but there’s a bit of anecdotal evidence that sometimes, although the ADHD symptoms can improve, sometimes the autism symptoms can actually get worse. We’re doing a trial of that at the moment with another PhD student whose name’s Mia Moses. Again, very excited about that.

Then on the other side is the Australian ADHD Professionals Association, where we were very fortunate to have the ability to lead the development of Australia’s first evidence-based clinical practice guideline for ADHD. That was approved by the NHMRC and launched by Minister Butler last year in October. Since then, we’ve also been able to develop what’s called a consumer companion. This is being developed by a person with a lived experience of ADHD, Lou Brown, who’s herself, a PhD student over at Curtin University in Perth. She’s really taken the whole guideline and distilled it down in a very easy to read, accessible format for folks with ADHD.

The guideline itself is 200 pages or something. This Consumer Companion is only 30, so it’s much better for folks with ADHD to be able to jump in and have a look. Our website, www.aapa.com.au has all these resources that are freely downloadable. I think they’re really useful for giving folks with ADHD or families the latest evidence regarding what are the most effective interventions, what’s the appropriate way to diagnose ADHD. It’s really about empowering people with ADHD and those who care for them and love them to be able to have the latest knowledge at their fingertips, and really empower them in making good choices and best choices in the treatment options that they might look for.

Dr. Lisa Interl…: We were talking before about stigma and language, the importance of language. Could you just tell us a bit about your-

Professor Mark …: Yeah, yeah. Look, I think all neurodevelopmental conditions at some point have suffered from stigma. ADHD is probably a really good example of that because we do still have elements of society that push back, that reject the diagnosis, and that make some fairly outlandish, to my view, claims about ADHD. This was another project that we led at AAPA, and again, led by Lou Brown and another colleague Quinn, where we put out a talking about ADHD guide, which was really our attempt to take that conversation and put appropriate language around ADHD, how we talk about ADHD in a way that will actively reduce stigma rather than talking about it in ways that might reinforce stigma.

On the website, there is a language guide that you can download. Many clinicians have downloaded it and put it in a sort of poster form in their offices to help describe things to people with ADHD and do that in a way that’s respectful of the condition. Personally, as I’ve told Lou many times, it’s been really important for my own journey, I guess, as an academic, and the ways in which I talk about ADHD, and indeed the ways I research it, are really quite different now because of that lived experience perspective. In most of our projects, if not all of them for ADHD, now we have involvement of lived experience of people in our studies, because sometimes what I think might be interesting to study as an academic might be entirely irrelevant or pointless to people out there in the community who really want us to focus on different issues.

Dr. Lisa Interl…: For sure. That’s like engineers building something that nobody wants.

Professor Mark …: It is, right.

Kristine Christ…: Well, thank you so much today, Mark. We’ve really enjoyed talking to you, and I know you’re very busy, so we really appreciate your time. We will put on our website your details and on our socials as well, so people can link into your website.

Professor Mark …: No problem at all. Thank you both for your time and your interest.

Speaker 1: Thanks for being part of the Loop Me In community today and joining our conversation on raising children with disabilities. Join us for the next episode on some of your favorite platforms like Spotify and Apple Podcasts. If you would like to support us, please recommend the Loop Me In podcast to your network of parents, carers, and providers. If you would like us to cover a topic or invite a guest to chat, please email us at contact@loop-me-in.com.au, or go to our website at loop-me-in.com.au. If you’ve got any feedback, please let us know so we can improve and cover issues you want. Of course, if anything in the podcast today has raised concerns for you, you can contact Beyond Blue on 1-300-22-4636, or lifeline on 131114.

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