The art of belonging and ADHD with Madeleine Jaine Lobsey

Laetitia: Welcome to The Neurodivergent Pulse, where we explore the often misunderstood world of neurodivergence with experts, parents, teachers and therapists. Grounded in lived experience, each bite-sized episode gives you something practical to try. I am your host, Laetitia Andrac, AI expert, neurodivergent mum and founder of Understanding Zoe. This podcast is recorded on Dharawal country. I acknowledge that sovereignty was never ceded. It always was and always will be Aboriginal land.

Laetitia: Hello Madeleine, welcome to The Neurodivergent Pulse podcast.

Madeleine: Thank you. I'm very excited to be here. I could see your face when I say Meline.

Laetitia: I love it. I love it. Nobody says it as... Yeah. So, as I told you in the past, and for our listener, my grandma was called Meline. And I love this name. I find it really beautiful. So, here I am. So Meline, for our listener who haven't had the chance to meet you yet, can you share a bit more about yourself and how you ended up doing the work that you do with Wonderverse?

Madeleine: Yes, so this will probably be a very common story for many people listening to this. My youngest child was severely struggling with school particularly, and nothing I was doing was making any difference. And then something happened that was awful, and so we went to a psychologist, and it was only then that person said, "I think your child is Autistic and has ADHD." And at that point I really thought that it was only boys, and that it looked like a certain way. They were hyperactive and they loved trains. I had a very stereotypical version of it, and that sent me down the rabbit hole in the way that only a neurodivergent person could go, because I went completely down the rabbit hole of research and discovering things and finding institutions, and I got head hunted to work for one, and it was there that the culmination of my life came together. I'd always been someone who created extraordinary experiences and events for people, and I'd always done training and leadership and mentorship. So when I was eight I used to play businesses, and I created this business called Wonderverse. And three years ago I went, it's time, it's time to actually make it. So now what I do is exactly that. I create experiences and play events for all neurotypes, and training and consulting in neuroinclusion. And along that journey found out myself and my entire family...

Laetitia: Yeah. The journey of understanding, right? This is really that, and that's what I love about many of us: this journey of self discovery and understanding, and you know, the grief that comes with it. So let's actually dive a bit deeper in that. You said you had this, you know, typical view of what ADHD looks like, and actually we often hear in conversation, oh, ADHD people find it hard to focus, they have time blindness, all of those kinds of things, and control. But you approach this through a lens of creativity and play and belonging. So can you share a bit with us about, from your experience, lived experience in yourself or with your children, what has been, what's underneath the surface of ADHD?

Madeleine: Yeah, I think one of the really common misconceptions with ADHD is those things like you're either hyperfocused or you're lazy or you're super energetic, and people look at it that way, where actually what's fundamental is regulation and an inability to regulate. So I once was working with a mechanic, and they were telling me that car pistons go like this, right? And as soon as the pistons stop doing that, there's this whole impact on the car. And with a neurotypical person, their brain, their body, their systems go like this. And...

Laetitia: She's doing this with her hand. She's trying to...

Madeleine: I'm going up and down like a piston. Yeah, I'm going up and down like a piston. Very badly. You're not missing much. And yeah. And so then, with neurodivergent people, that up and down regulated motion of the piston will either go very, very quickly, or stop altogether, or be in a jarring rhythm, and there's an enormous impact on the rest of us. So actually regulation is key, and there's multiple pathways to that. And what we find with creative activity or play based activity is it's a real opportunity for regulation, and regulating in a way that works for you. There's not tight parameters to it. It's got a loose scope that you can be inside of to regulate yourself.

Laetitia: I love that. And that is so true. It's, I shouldn't say that is so true. That is so true for myself. I really find that regulation, and for me my outlet will be singing. I'm always, you know, since I'm little, I'm inventing lyrics when I do things. It's like my way of steaming and soothing and regulating my nervous system. And I find that when I am in that space, I'm able to do things that I'm not able to do if I am in a state of dysregulation, or where my nervous system is heightened.

Madeleine: I love that. Yeah. And I think the part for me, like the barrier to me even recognising myself as ADHD, was I really thought it was like physical hyperactivity, right? And I never saw the bit about, you know, it wasn't until I was in the process of diagnosis, and they said, "Okay, so just tell me about your life and what you do," and I reeled off like 20 things, and I said, "Look, there's probably more, but that's the basics," and the person just laughed and said, "Yeah, I reckon that's the profile of someone with ADHD." And I'd never gotten the mental activity of it, and the kind of speed in which I think. And so then what started to happen was I could see the mental dysregulation more clearly, and then I started to look back on my life like you did. So when I was little, I was a dancer. So I was always dancing and moving, and I did it, you know, a lot, like professionally, until I was 20, 21. And so even when I was talking to someone, I would be dancing. People would say, "You're always dancing." And I thought it was like this quirky creative thing, but actually it's a form of regulation. And when I move my body and I'm moving around, my, well, what we know scientifically is that it supports your executive functioning to kick in.

Madeleine: So, you know, there's been all this discovery about what it looks like in a female presentation, which as we know has far less research, or far less documented experience.

Laetitia: Yes. Yes. Which is a beautiful segue to the next question, which is all about the late diagnosis layer. You share openly on your website and so on that you were assessed when you were a 49 year old, and I think a lot of parents in our community listening to The Neurodivergent Pulse, coming across Understanding Zoe and our app and our work, they go through the journey which has been my lived experience of, "Okay, I don't think there is anything different in my child, because they act and do things that I was doing as a child. So why are you telling me I should seek an assessment?" And then opening the conversation with family members and things like that, and then going through our own journey. So I would love for you to share a bit more about your experience, and maybe one side of it being the grief and another side of it being the relief, or whatever you want to share about this. Because I don't want to put words in your mouth, but what has it been, your journey of discovering all of that later?

Madeleine: Well, I think there's a couple of things. I think it's really critical to say that the ADHD presentation, particularly for women and girls, can be so vastly different, as it can be for everybody, but really vastly different. Like, you know, yes, I'm creative, and it shows up that way, and it probably hid so many things because it kept getting kind of palmed off as, "She's eccentric, she's creative, she's dramatic." So there was a level of masking or misunderstanding that, you know, nobody could see anything. But it could equally be the case you could be mathematically obsessed, or, you know, you could be someone who's just a deep empath, and nobody spots it because they go, "Well, she's just really kind." So there's lots of things about how it all gets hidden along the way. And you know, we do learn to mask, and we do learn to survive. You know, I think women, neurotypical and neurodivergent women, have to learn to survive in ways that men don't. So it makes sense to me that we mask more, because we've just always been taught to be good at it. So it took me a long time to recognise that there was anything I was really dealing with, because I'd just learned to survive, and not just learned to survive, you know, like even at a base level, but like even really succeeded.

Laetitia: Yeah.

Madeleine: And the thing about it though was, at what cost? Because as I went on in my life, there was a greater and greater cost to me. And I began to notice I just did not have the energy to keep going the way that I was going. And that, as someone who'd been a high energy human being, felt incredibly debilitating. And so I was really on the fence about, do I get a diagnosis? Don't I get a diagnosis? You know, all of that, what's the point? But lucky for me, I was surrounded by neurodivergent women, adults, in my work. And the more I spent time with them, who never ever pushed me to go and get a diagnosis, the more I could see the value and the power in having one. And so eventually it was like, I want what they have. And I think what you have after diagnosis is, yes, some grief, definitely, for some people a lot of grief, looking back, "Why did I suffer with this for so long? How did this go?" And all of that. But I feel like you also get your hands on the levers and dials of your life. You know, you can start to see what works for you, you can start to see what you need to be really empowered. And then the next big journey is, are you willing to advocate for that, and self advocate, and get what you need?

Laetitia: Which is a big one, right? The internalised ableism kicking in when you've masked all your life, and that's definitely been my journey. Masking all my life to fit in, and then going through the burnout and all of those elements, and then being like, "Okay, I am going to ask for this accommodation," and having this little voice in my head being like, "But you don't really need it. You've coped without it for so long." You know, this internalised ableism kicking in that we have to fight when we've been masking and fitting in for so long, to reclaim our own self and our power.

Madeleine: Yeah. And I think what gave me power with that eventually, like as you were talking I was going, how did I get to the point where I will ask for what I need? And I remember, it was like, you know, like anything, once you begin to meet your community, you start to meet elders and people who have been through it a lot longer than you. And you know, so I was talking to what I would call an elder in the community, and they were saying, look, even from an evolutionary perspective, the way that neurodivergent people think is the predominant source of innovation for humanity. Most innovation comes from divergent thinking, and it comes from systems thinking and associative thinking, and a lot of the things that we are typically known for as a neurodivergent person. And it's your job to bring that to life, and bring that to humanity, and to not diminish the power you have to innovate in your thinking and in your expression, and the rest of us will rise. And there was like a call to action, where I went, this isn't just about me anymore. This is about what's possible for human beings if we really are empowered as our whole selves.

Laetitia: Yeah, agree, agree. I love that. I love that. Which is again a beautiful way to weave into the next question, which is, you've seen through your work, at the intersection of art and neurodivergence and creativity, different families and children who may identify as ADHD or may have an assessment of ADHD. What have you seen being some elements of that working, that we could apply at home, or we could investigate in the school system, or we could investigate by ourselves? What are the things, you know, because I'm always keen to learn, and again, you know, what I'm going to share here, it's for everyone to experience and see if that's working for them, but do you have anything that you've witnessed working in different situations?

Madeleine: I totally do. So, I think I've got to start by saying, what we do know is that, you know, there's that statistic about, by the time an ADHD kid is seven, they've had 40,000 more negative things said about them than another child. 40,000 more. "Don't do that. Why are you doing that? Stop doing that. That's not what we're doing now. That's not..." You know, all of those kinds of comments, all the way through to, "Oh, you're so annoying," or "you're an idiot," or "horrible." So, 40,000 more. So you've got a human being who's constantly trying to fit into the way they should be. And as parents, there's that pressure to raise a child that's going to be able to survive in that world. So whether we like it or not, we all do it. "Honey, don't, maybe try this, don't do that." You know, it might be softer, but it's the same thing. So what I know about creativity and play is, it's an opportunity, in a way that is safe and fun, for people to explore all parts of their humanity. And in great creativity, one of the fundamental principles is, someone creates something, and then you continue to add to it and evolve and move forward and keep acting on it and shaping it, and you play with it, no matter what the art form is. And that is revolutionary for an ADHD child, to have somebody say, "Yes, I love that blue splot on a piece of paper. Now what else can you add?" That's revolutionary. That's like, "You mean I can generate something? I can have a say. I can create. I can explore the things that I think," whether it be on a dance floor, or in a drama class, or with a piece of paper. So it's not just creativity. It's an opportunity to discover...

Laetitia: It's a way of communication indeed.

Madeleine: Yeah.

Laetitia: What you're speaking, you can use your creativity to express yourself.

Madeleine: And that could be in building a Minecraft world. That could be in Lego. It doesn't have to be in quote unquote traditional arts. And you know, even in the arts, you actually spend, it's probably what I loved about it, you could spend a lot of time with people, but actually in solo pursuit. So you do that, like, what's it called, when you're co-playing, or whatever, where you're...

Laetitia: Playing parallel.

Madeleine: Parallel playing, yeah, you do a lot of that. And nobody notices, because that's the nature of the structure of it.

Laetitia: Yeah, I love that. Good. So good. And so, one more question about this, which is, we know through our own research at Understanding Zoe, on 191 families, that 63% of parents of neurodivergent children identify themselves as neurodivergent, which is, you know, a statistic in a way which is based on our sample. So, how do you create that sense of playfulness, safety, creativity, to regulate the nervous system of your ADHD, when you are yourself ADHD? And that's a question that I ask for everyone, but that I feel nearly every day. This full of my own needs and my daughter's needs, and sometimes they're conflicting. Sometimes we're aligned, sometimes we're able to co-regulate, but sometimes I'm not able to provide this. So what has been working for you? What have you seen in your events, in your moments of connection with those families and children?

Madeleine: Yeah, look, that's a really long answer, because I've now learned a lot of things about neuroinclusive practice events. But I guess if I was going to say it briefly, particularly about, you know, my tagline for Wonder is, all neurotypes can work and play together. So I am talking about co-regulation. We hear this term from the NDIS, so I feel like it's kind of been ruined in a way. But I think what is really important is choice and control. So in any environment where there are choices in participating, not participating, in the way that you can participate, and then you get to have the say about your participation, not participating, or what you're going to participate in, there is an instant sense of safety, and an instant, almost instant, sense of regulation. And then if you can do that even in your own home, where, as a mother with a child, or a father with a child, someone else with a child, that there's choice in participating or not, there's choice in what to participate in or not, and that you have the say with that, you can end up doing the dance together of regulating the way you want. And that is in the simple things, like in our house, I really struggle with light. For me, I really struggle with light, but my husband, on the other hand, loves it. Like, he would go and live in Kmart under the fluorescent lights if he could, you know, like loves it. So you can imagine, in our household, that dilemma, and we've started creating zones and spaces in the house that are really lit, and zones and spaces in the house that are either lamp light or nothing. So that, and they're really close to each other, so he can be at the kitchen island bench under really bright light, and I can be only a couple of metres away, sitting on a chair in the dark, and we're participating together, but in a way that works for us.

Laetitia: I love it. So good. So, so good. So, one more question before I let you go is, can you share with us a story, or an experience, or something, where you were like, "Oh my goodness, creativity and play really creates miracles"?

Madeleine: Oh man, I have so many of those. You know, I actually now have a saying that I say every time I do anything, which is, when you allow people to be, magic happens. And it really does. So, you know, I think about families. I had an event up at the Brisbane Powerhouse, and you know, it was a sound based event, and in one room was a huge silent disco with lots of different tracks and really cool festival DJs. And then in another room there was a silent art making activity that was completely visual cued. And then in another space, people were writing lyrics and handing it to musicians, and they were making up songs on the spot. So there were all these different opportunities to participate, and not participate, and it was for all people and all ages. So we had, you know, 25 year olds raving with the DJs, and then families on the other side of the same dance floor dancing to Taylor Swift. So in those moments, when we watch whole communities of diverse people really free to be themselves, there is a connection that's unbelievable. So strangers begin to talk to one another, people begin to connect and dance together, like five year olds and 25 year olds. And you know, the biggest thing the families say at those kinds of events, over and over again, is, "We want to come to things like this, but when we come, we last 10, 15 minutes before it's too much for us." "I've been here for 3 hours and my kid doesn't want to leave."

Laetitia: Wow.

Madeleine: And that's magic for a family, and for other people, then, to see their child in their fullest, greatest expression. There's nothing like it. When other people get how great your kid is, there's nothing like it.

Laetitia: I know. So special. Oh my goodness. I'm loving this. Thank you Madeleine for coming today, sharing your lived experience and your expertise in the space of creativity, play, and everything you create with Wonderverse. If anyone is interested in learning more about you, learning more about Wonderverse, how can they find out, and how can they connect with you?

Madeleine: Either, I mean Instagram, you see all the, you know, the juicy bits. So that's just Wonder, which is like Wonderverse. Or the website is wonder.com.au.

Laetitia: Thank you. Thank you so much for joining us today.

Madeleine: Thank you.

Laetitia: That's a wrap for The Neurodivergent Pulse. If this helped, follow the show and leave us a quick review on your favourite platform. You can even share this episode with someone who needs it. You can learn more about our platform at Understanding...