Without further ado, we have our next guest waiting in the wings and I would love to just also bring on our, Melissa Webster, our ADHD Australia CEO. Hi, Mel. Good luck. Hi there. I am back.

Fantastic presentation so far. Really enjoying. Wonderful.

Really, really great. So very lucky and fortunate to be a part of this audience and also, you know, be a part of this studio, while we hear about this information firsthand. It's, it's we're so very lucky and fortunate to be part of ADHD Australia in this way with such great minded individuals. And and we have another, to share and I'll won't steal your thunder, Mel. I'll I'll let you introduce our next speaker. Fantastic. Thank you.

Okay. Hi there. How are you? So so I would like to formally welcome Professor Michael Kohn.

Lovely, and thank you very much.

Oh, dear. I think we've had a Mel's had a connection issue, I think. She is frozen. Yeah. She is frozen. Let me just unclick her for here, and let me just try again. Oh, dear. That wasn't we'd we'd we had all this lined up, Michael. Sorry about that. Hang on two seconds. Let me try and bring her back. No. Still frozen. Okay. Alright. I'm going to I'm going to jump in here and and make sure I can not fumble through your introductions, if I may. So, professor Michael Kohn, area director for adolescent and young adult medicine for Sydney, head of the department for AYA medicine at Westmead Hospital and non executive director at ADHD Australia. Welcome.

Lovely. Thank you very much for the introduction, and I really appreciate the opportunity to be here and to talk today about a lack of care that quite commonly is experienced by the ADHD community. I just wanted to also start by thanking the ADHD Australia executive for just fabulously putting together today and all of the speakers. And, again, my privilege just to be able to join in. So thank you very much.

Well, we certainly couldn't have done it without the support of our board. So right back at you, Michael. Thank you for being here today. Now just so that I can make sure I have the latest questions up and running, you know, it wouldn't be a global conference that's live without a little hair raising last last minute grab for making sure that we have everything ready to hand. So if you bear with me while I pull this up, I mean, I think what would be really beneficial, and not knowing if you've had an opportunity to have a look at the stream as it stands. I know that you're a busy man and in clinic, but.

I'd love to I'd love your opinion on having seen the lineup and and what we've been able to achieve here today. I mean, what what do you think could be a key audience takeaway around this knowledge share across countries with the ability to bring in, you know, really relatable stories from all over the globe. What what is your hope for today?

That that really people, professionals and the ADHD community appreciate how much is changing and how quickly things are changing. And, clearly, change is absolutely needed. There are key areas around caring in the community, also understanding the community and what the community's needs are, where there are major seismic shifts that are occurring here in Sydney, Australia. But equally well, I think what we've heard today, what Patrick was just touching on is that the science, the knowledge about ADHD, that is changing so quickly as well. So change is is happening, helps on the way, and the way that we understand what is best needed and now through these strategies is for communication using conferencing, bringing in.

All of the stakeholders. This is how change is going to happen and for the best.

Yeah. Wonderful. And I think and I know you were present there in the green room behind whilst doctor Patrick was presenting his slides. And I just I've I've got a question for you on this and it's in and around, you know, a lot of people are saying that ADHD is being over diagnosed. What what do you think about that?

I think it's definitely not being overdiagnosed, and my thoughts are that it's, in fact, being underdiagnosed. There there are a number of reasons, I think, that clearly explain why it's being underdiagnosed, and that is what ADHD actually is. Cognitive inefficiency is just being recognized. It was seen as bad behavior, and who wanted to be a bad parent or a child who's having bad behavior? So there was an aversion to sort of understanding what actually is happening in the life in the world of someone with with ADHD. And the other reason I think it's been underdiagnosed is it's just so hard to find someone to make a diagnosis.

There's a time. There's a waiting list. And then there's also here in Sydney, Australia, a significant cost. And these are all major barriers, the the stigma, and these other practical barriers to care that are areas that are urgently in need of change.

And this is you've touched on something there in around, you know, the length of time for formal diagnoses. But, you know, as people who are doing their own research and potentially, you know, I'll I'll give you a related my child has ADHD.

And as I uncover more and more around ADHD and his nuances in the way that he's presenting for him, I'm I'm to find content really very relatable, to my own experiences. And, you know, just really stumbling into that is certainly something that, you know, I'm spending some time with. But, you know, I'm not necessarily going to start down the formal diagnosis part just yet. But what do you say to people that have been on this wait list for a very long time awaiting formal diagnosis and potentially having that kind of imposter syndrome around whether they present or they don't present and just those characteristics around how they're trying to self identify?

What do you say to those people? Look. Thank you. That's such a key issue. To unpackage it, to talk a little bit about some of the elements of all those things you you you brought up, I think that there is a range of ways that our brains help us to solve life's challenges. And, clearly, there's ten percent of the population at least where how they how their brains are helping them to make those find out what those answers are to cope with the stresses and pressures of day to day living means that they they don't do that efficiently. They aren't able to stay on task. They do procrastinate. They are easily distracted. So these inefficiencies are definitely occurring for at least ten percent of the population.

That actually result in those people experiencing impairment. They're more likely to have accidents at work or or driving the car because of those factors. There's ways in which education is likely to break down or promotion and employment is less likely to occur. So these are factors which are highly regarded in the society. And if you don't have them, you're at a disadvantage and or could be worse. There could be areas where actually, because of the behavioral changes that it leads to, that you you might find not being able to stay in school, in work, or in relationships as well. So so, definitely, these are absolutely key areas.

And it and it's really very key because I've I mean, what doctor Patrick also described as a metamorphosis in and around, you know, a a life progression, without the interception of diagnosis. And, so what I wanna understand as well from your perspective, Michael, is in and around you know, we hear everyone's stories is different regarding ADHD. You meet one person with ADHD, I've heard today. You've only met one person with ADHD, as it as it represents differently for different people. So if you could, if you could give our audience some direction around fact for myth, Is there is there a line of is there a line in the sand there around what you can share? I think it is a fuzzy line, and and that makes it a little bit difficult.

We do have a a classification system that paediatricians and psychiatrists use called the diagnostic and statistics manual. And and, again, that's tends to, as best one can at the moment, in black and white, set out what ADHD is and and what it isn't. But in the process of doing that, it really isn't still clear exactly what we're talking about. I think the better way of just appreciating what ADHD is is this cognitive inefficiency with all the various ways that that's occurred that we've just sort of touched on a little bit, and to understand also that it's not a childhood disorder alone. It's a lifelong disorder for most people.

And so they experience the symptoms and the impairment not just through childhood, but into their adult lives as well.

And so in terms of the, I guess, the approach to treatment, and, again, it it's it's very timely, obviously, with the way that we've constructed the agenda and and the great speakers that we've heard from today. In regards to, you know, you don't necessarily grow out of it. So what about the stigma around, you know, medication for adults and, I guess, that transition around you you have it for life? What is the contemporary approach to treatment in that way?

Well, this is one of those areas of change, and I think medical research has really helped decision makers in the industry, but also in government and also in the community. Our peer leaders now are much more confident about letting people know how is their experience and what are what is the impact for them in understanding that pharmaceutical companies are now doing studies of using the medications in adults. They never used to do that. Government has got policies and procedures in Australia. We've got a disability insurance scheme that still currently excludes ADHD as one of those disorders causing disability. So those decision makers in government, where industry's gone now, I think we'll see increasingly.

That stigma for adults start to break down with this new knowledge, shining light, not heat. And I think the medications that have worked so well in childhood will see continue to be available for adults. And and as Patrick, Concannon just mentioned, doctor Concannon mentioned, we are seeing on the horizon new treatments as well. And I think as they evolve, they will be available to both children and adults.

And, absolutely, you've touched on something there in regards to the senate inquiry, Michael. And I I wanted to quickly pause on this knowing that you were instrumental in terms of ADHD Australia's participation in in our submission, if I may say, Al. The submission, for the senate inquiry, I would love for you to just articulate for our audience, you know, what what was our role in that, and what was it really important for you to portray within that submission and and any questions that you received back that you thought, oh, you know, light bulb moment in and around, I guess, the place of an organization like ours within this ecosystem?

Yeah. I think what I saw ADHD Australia have the opportunity to do is to be a brick in a wall. And and so it was important that ADHD Australia that has been a peak body over the last five, ten years in Australia representing the ADHD community absolutely place their brick in in this world. And and we we can talk a little bit about the content, but I think also what's really important to recognize was the role, ADHD Australia had in supporting other people to develop their bricks and to put their bricks into this wall as well. So ADHD Australia had a real pivotal role in mobilizing a number of people and resources to make contributions in addition to our own. But what we heard and what we put into the submission from ADHD Australia.

Was the information that our ADHD community in Australia had informed us about. And we tapped into what's going on through e platforms, through our Facebook page, but we'd also run-in October's of previous years surveys. We've surveyed each time around two thousand Australians with ADHD, and we've asked them what's really important in their life, what's working for them in assisting them with managing ADHD, but what's not. And so we had a really important, rich, good dataset that we could draw on to then let the government know what actually ADHD community in Australia were needing?

Absolutely. I found the submission, and I think, off cuff, it was roughly around six hundred and seventy hundred and seventy submissions via our community for the senate inquiry through our through our survey platform and through that mechanic. And a wonderful opportunity to aggregate some of those key themes in and around, as you've touched on, diagnosis coverage in terms of NDIS and what that actually means and where to from here. I guess one one quick question to to wrap up on that senate inquiry before we move on to another topic.

Which is in and around, you know, in terms of an insight, knowing that you have you're in clinic day to day, you see you you see and hear from a a great deal of people, what what was the major insight that you thought was just really driven home throughout this process, in the submission with the senate inquiry?

Probably a couple of things if I could just touch on that were most significant as I saw it. Certainly, I think what was really impressive is that ADHD affects every community, every person, every family, directly or indirectly in Australia. So we talk about, like, numbers. We talk about prevalence in in in terms of professional talking, but what we were able to say was that ADHD Australia knows that there isn't a classroom in Australia that doesn't have an ADHD student. There isn't a family in Australia that in their own extended family or in their family context doesn't have contact with someone that's got ADHD. And so, yes, what they're wanting was for there to be a better way that's accessible for diagnosis.

But what the community also wanted and which was equally urgent as we heard it was they want help. So they want practical ways in which ADHD can be accommodated and that the needs to be able to work in a level playing field in the community, whether it's at school, at work, or at university, they want that accommodation, and they wanna be able to run with the pack. They wanna be not seen as separate or different. They just want that accommodation that allows them to fully participate in the society.

And we've heard that today, haven't we, in regards to some of the speakers that have preceded you? Some of the key themes I love the word equity. It is simply, you know, it needs to be equitable in terms of the way that it's brought together and and recognized within the community. And then also to just adjustments and accommodations and what that needs to be and what that needs to look like are incremental. They're not necessarily large sweeping pieces. But one of the things that I wanted to address as well in terms of what you have seen and being recognized and working in your clinics, just I guess the stigma that is involved with ADHD in identifying and how that comes to bear.

Could you share any thoughts around that? I think that's one of the huge successes of ADHD Australia through media work, through liaising with government, and just professional groups, including educators, that we've been able ADHD Australia has been able to change the narrative around ADHD, the conversations in Australia. I remember when I first came on to the board for for ADHD Australia, and that was in 2015. At that time, our media way that we were engaging with media in Australia was to combat negative statements being made by pseudoscience people, politicians under the cover of speaking in parliament. There were a range of ways in which there was disparagement of the community, but also the professionals.

That were supporting the community at that time. You know, they were seen to be giving children drugs, not medication and treating symptoms. These stimulants were referred to as kiddie cocaine in the literature in the in the media. So these this narrative has changed considerably, and I think it really does allow, number one, the community to feel stigmatized. But two, it's allowed government a little bit more wiggle room to open up conversations and to have inquiries. And and perhaps there could be a little bit of time where we can just talk a little bit about how we got to this current situation and and and actually that Henry report from 2019 as well. Absolutely.

Let's dive right in. So happy for you to talk to that. Please do. So.

We've talked today already about a number of the the positive ways, that ADHD is seen and and people are looking to support and manage ADHD. We can talk a little further about those positive aspects in in terms of industry and and the tech industry and how it's absolutely grasped neurodiversity and people with ADHD in particular in in in that area, opened up employment and and and opportunities, which just hadn't been there for those with ADHD, in the past. But that would be only one side of the coin. And going back to these early days where in in the media and and and the very vicious way that that stigma polarized the society and worked against those with neurodiversity and ADHD in particular.

There was a lot of focus on the negative behaviors that occurred when someone had ADHD. They would do the wrong thing, but they would keep doing the wrong thing. They were emotionally dysregulated. And and so there was a way in which their behavior was seen and and attached to to ADHD, and that if you had that condition ADHD, yes, you weren't a good person because you did bad things, but you also didn't have good parents. And so those negative attributes were attempted in Australia to to be reset, to be looked at again as part of the Henry report in in 2019. And one of the ways in which that Henry report is so important for us in Australia is that it identified that whose responsibility.

Is it to not only just support the symptoms, but to go further and provide care for those with ADHD. And in that Henry report, what was very notable was everybody was recognizing, well, maybe we do need to think about ADHD differently, but then whose job is it? And and, unfortunately, as was identified in the Henry report, mental health took the step back. They did not take the step up. And I think that's a really important next part of the development of caring for those with ADHD, that we see mental health embrace ADHD. It's not just a developmental condition for pediatricians anymore. As we've said, it's a lifelong condition, and we need mental health to be certainly part of the ongoing support and caring for the ADHD community.

Absolutely. And when you talk about and I know that from a from a childhood perspective, building scaffolding around around a person so that they have the tools, they have the they have the toolkit in order to succeed. And and, you know, as as as you grow older, you you inevitably pick up your own behaviors in and around what works and what doesn't, etcetera. But as as they kind of move through, the access requirement is different. So could you talk to us a little bit around access and what and what that needs to be and where you would like to see the change in regards to, you know, again, those those scaffolding pieces? So.

Absolutely, lifestyle and the accommodation, those things that we were talking about, that is the best treatment for someone with ADHD across their lifespan. But initially, at the point of diagnosis, it's very hard to assemble that scaffolding and to find out what's going to work, what's going to be best for that individual person. And sometimes, again, some of those negative consequences have built up, and they're not actually able to access the scaffolding and to to be able to change, to develop skills in in the same way that they would do over, again, the time course over the next several years. So at the time of diagnosis, it's really important to control the ADHD symptoms, provide a platform for change.

And, again, as doctor Kohn Cannon talked about just in this last session, medication remains still the best, the most efficient, the most cost effective way to initially establish the caring and support an ADHD person needs to be able to have those accommodations and to be able to level the playing field in their lives. So I think pediatricians, that is their main tool of trade. They're very canny. They've seen ADHD across their working lifespans, and Patrick said that can be here in Australia thirty, forty years. And so, yes, there's a lot of listening to the stories and caring, but I I think being effective is what the paediatricians are able to do initially with support through the medication. And and.

I think starting to putting that scaffolding in place with psychology, with functional measures, like speech therapy to do social and communication skilling, occupational therapy in the same way can be very effective. And then there are a range of altered therapies which have been involved too. Can I just add, at this point, one word of caution, That a lot of the families, especially around this time of diagnosis, it's a point of desperation? It's a point of crisis, and they are absolutely help seeking in desperate ways that they'll take on board a lot of other people's advice. And so what tends to happen as well is, yes, you can't necessarily access a psychiatrist or a pediatrician.

But you can go and and you can get non evidence based treatments. A lot of people will try a whole range of things with balance bars, with diet, with different forms of brain stimulation now in Sydney, Australia. And I think one needs to be very cautious that even though things are in a moment of crisis, to sort of get the advice which is evidence based and have those kinds of treatments that we know are going to be initially effective.

But how would you how would you talk to someone who, as you say, you know, getting to the point of desperation? Potentially, there's other things in the mix as well. And so getting access to those different, professionals is a very hard in terms of the wait times, but also too very expensive, especially when it's, you know, not necessarily subsidized. Well, where would you point people to to give them a range of, you know, toolkits, I guess, in regards to how they can make it work in the meantime and kinda save sanity?

This comes back to what was in our ADHD Australian proposal to the federal government. We have proposed a range of models which aren't doctor dependent. I think that's a single point of failure in lot of models of care. And so in The UK, I think, again, there may have been in parallel sessions, nurse led models that have been really already well tried, well proven to be very effective at this early engagement and early stabilization, early support. There's another initiative in Australia, which I'm part of in parallel with working with ADHD Australia, and that's a federal government grant for called Growing Minds Australia. And that's another area that the government has asked universities.

To come up with ideas and also to to road test them, to pilot them so that they can then see what might be a very good investment for the ADHD community. And Growing Minds Australia is looking at both questionnaire and nurse led initiatives to understand exactly what is needed at the point of initial contact and to put in place some evidence based strategies that can be done even before you get to see the doctor.

Amazing. And and that is such a constructive way forward. And I guess if you were to fast forward, you know, fifty years and look back at this period of time in our society and in our ecosystem, what would you what would you be thinking as, you know, future you?

So I I thank you. I I just wanna take a a step back fifty years just from my own recent experience. My family immigrated to Australia then, and I was recently looking through their documentation, their papers. And what I saw was that they needed to have a medical clearance to come into Australia. And part of that was a physical health and an assessment of their mental health. And it wasn't whether they had a developmental disorder or ADHD. Really, the doctor was asked to tick a box. Were my family coming to Australia? Were they imbeciles? Were they idiots? There was a range of ways in which they were the words and they were the tick boxes.

And I think when you look back now, you see what medical doctors did in the way of processing and evaluating people. It just seems nonsensical. And I just wonder in fifty years forward whether people might look back and just think about we we stuck to this DSM five. What were they thinking? Because that really doesn't under explain what is going on medically or in the society for those people with with ADHD, and and I'm very hopeful that we'll have very constructive and much more precision tools in medicine, but also much better strategies right from the get go to put this scaffolding in place that's going to accommodate the lives of the community with ADHD.

Wonderful. And isn't it always glorious when you look back and and forward? It's just an amazing, it's amazing advancement in the way that we're even discussing it today. And I, honestly, I thank you for your time. You have been a wonderful insight. And I guess if you could leave us with just one key piece of advice for I think Ross mentioned earlier, we have over 7,000 people streaming across the globe. If you could give one piece of advice to, a very diverse audience, what would that be?

Don't struggle. Ask for help. Help's at hand now and increasingly will be available.

Wonderful. Gosh, thank you so much for your time, Professor Michael Kohn. We really do appreciate it. And as I said, it's wonderful to be part of the ADHD Australia team and to benefit from your knowledge directly, but then also to be part of our be part of the movement and what comes next in terms of building that constructive scaffold and way forward for for Australian individuals with living with and caring for those with ADHD.

Thank you for your time. Okay. Thank you all. We'll see you in the right one.