Episode 4 – Understanding Zoe: Supporting Neurodivergent Children in a Neurotypical World

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Transcript

Larissa: This podcast is recorded on the lands of the Wurundjeri people of the Kulin nations. We pay our respects to the traditional custodians of this country and elders, past and present. We extend our respects to any First Nations, Aboriginal and Torres Strait Islander people joining us today.

Welcome to today's episode of No Spoons to Give, the podcast where we explore life's ups and downs with neurodivergence, chronic illness and disability, and we chat with the voices that make our community so wonderful. I'm Larissa and I've also got our community manager, Maddy, in here today. How are you, Maddy?

Maddy: I'm doing well. I'm feeling tired, but very excited to be here. What about you?

Larissa: I'm doing good. The sun's out in Melbourne today. It's a Friday, so we're heading into the weekend, and we're chatting with an amazing guest. So yeah, feeling great.

Maddy: It's a good day.

Larissa: Yeah. I've got a recommendation for you this morning.

Maddy: Amazing.

Larissa: It's a podcast that I've been listening to for actually the last few years. I'm a long-term listener of this podcast and it's called The Psychology of Your 20s. It's a podcast which I think originally started out, as per the title, for people in their 20s, but it is relevant to a broader audience.

They explore concepts or universal experiences that define our lives. So it can be things like making friends, dating, dealing with chronic illness and mental health in your 20 or throughout your life. She has a background in psychology as well, so she's well-versed to speak, on the topic. And yeah, it's just an amazing podcast. It's also just really relaxing to listen to. She has a very reassuring voice, so definitely recommend that.

Maddy: I'll have to check it out. Since you're a long-time listener, it must be a good podcast.

Larissa: It is. It's hard to keep my attention. Have you got any recommendations for me today?

Maddy: I do. I've got a book to recommend to you. It's called Breath by Carly-Jay Metcalfe, and it is a searing, honest, and surprisingly extremely hilarious memoir of living with chronic disease, illness, and organ donation and survivor's guilt. It is such a beautifully written book. Yeah, I really can't recommend it enough.

Larissa: Wow, you always have really great book recommendations. I think I need to get into reading more, and also I think we need to get you onto running some kind of Spoony book club because I feel like-

Maddy: Oh my god, that would be-

Larissa: ... our community would love that.

Maddy: That would be a dream, honestly.

Today we'll be chatting with Laetitia Andrac, the founder of Understanding Zoe, and app designed to help parents and carers of neurodivergent children better understand and support them.

Larissa: Welcome, Laetitia. Thank you so much for joining us. We've been following your journey with Understanding Zoe, and we think what you're doing is absolutely amazing.

Laetitia: Thank you. Thank you for having me, Larissa and Maddy.

Maddy: For those who haven't heard about Understanding Zoe, could you please tell us a little bit about it and what you're hoping to achieve with the app?

Laetitia: Yes. Understanding Zoe started by accident. We hadn't planned on birthing this new business. This is my fifth business, but it started by accident to support our own daughter, Zoe. And we were, as a family, struggling with explaining to the teacher, advocating to the teacher, asking for accommodation, making sure that all the information coming from the different therapists that are surrounding Zoe's care and the support workers that help us through Zoe's care were all on the same page.

So Understanding Zoe is an app where, as parents, you upload all of the information you have about your child's care. And you can share it with your support village, so you can share it with the therapists, the teachers, the support workers, the extended family, whoever is helping you in the care of your child so that everyone is on the same page. And we are leveraging Generative AI to help parents, teachers, therapists, everyone to get the same information.

Something really important in our ethos is we are neuroaffirming. So if any documents are coming in our non-neuroaffirming, we'll correct that in our own language, in our own LLM. So it is really a beautiful tool to support parents, families, and everyone in the care of children so that we can understand them better. And we are not reproducing the trauma that some of us went through growing up being neurodivergent in a world that was not fit for us.

Maddy: That's amazing. That is so amazing.

Larissa: As someone who's neurodivergent, I really wish I had that in school. That's absolutely incredible.

If I was someone who had a neurodivergent child, maybe I was a parent or a teacher, how would you explain, I guess, how the app works and some of the features they might be using day-to-day?

Laetitia: Definitely. As parents, this app is for you. So it's built by parents, for parents. It's really our way of bringing lived experience back in the first instance. Again, this is part of our ethos. And so as a parent, you sign up to the app and you create the profile for one child or two, or we may have three children. Some of our clients have three neurodivergent children. I personally have two who are neurodivergent. So you create their profile, you upload the key documentation about the child. And then you invite teacher, therapist, whoever you want, to access those information.

So the way I explain it to parents, it's actually a way to make sure that everyone understands their child better so they don't have to repeat themselves. They don't have to spend hours on email, hours on meetings, advocating the teacher, as this at their fingerprints, but also the therapist. And also for themselves in moment of acute needs, they can look and find the right answer. Because we are expected, as parents of neurodivergent kids and we are very often neurodivergent ourselves, which is my own journey, to understand our child very well. But sometime we have our own journey and our own trauma and our own responses, which may not be the one that your child needs in those instances. So it's about leveraging the core knowledges in the moment.

Maddy: That sounds amazing. It sounds like such a time-saver for parents and carers. Yeah. So I was wondering, how have you consulted with younger neurodivergent people and their parents and carers in building this app? What has been your process?

Laetitia: Yes, thank you for asking this question. And I have a background in strategy consulting and I'm a human-centred design practitioner. So I'm huge on involving the user in the design of the app.

We had over 50 interviews that we ran with parents, but also with their kids and teachers and therapists, to understand what was a missing point in the journey, why were we so many of us burnt out? About 70% of us are burnt out as parents of neurodivergent kids. Why 37% of mothers of autistic kids quit their job? Why all of this that happened to me is actually happening to a broader community and how might we solve this issue?

So we started through those discovery conversations, through this process of discovery, to refine our features. What started just for us, for our own family, and we called it Understanding Zoe, as our own help, began to foster with new features. So it started as a repository of document and using large language modelling to extract the key information from those documents. But based on those conversation, we understood that parents, teacher and therapists would like to also be kept across what is happening on a day-to-day basis with a child, so that's where we're starting the journaling feature in our app.

And then from there we learned that a lot of people in their own journey would like to discover a bit more about the sensitivities of their child, so we're developing a framework at the moment with a researcher. We are building with the community, which is a very neurodivergent thing to do. We build with rather than without anyone and just doing it by yourself. So it's a very co-design process and human-centred design approach.

Larissa: I really love that approach, that whole idea of co-building with your community. It's really similar to what we do at Spoony as well, and just making sure that the wider community is involved in every step of the process, which is probably why you have such an amazing product.

How important is community, not only for neurodivergent children, but also the parents and carers of neurodivergent children?

Laetitia: I'd say it's essential. And that's where very early on in our journey, we connected with Nicholas, with the CEO of Spoony, and we always shared this passion around how might we build a sense of understanding from people who go through a similar journey.

And as parents of neurodivergent children, a lot of people are like, "Yeah, I know, my kid also is anxious. Yeah, I know, my kid also refuse to go to school. Yeah, I know." But we're talking about can't go to school, the can't group. We're talking about moments of really high spike of isolation, anxiety, burnout. We are talking about a extreme situation. And so it's really important to create this sense of community.

And so I love to bring community together. I love to organise community events. And so that's at the heart of the Understanding Zoe value proposition, which is bringing those parents together in a space where they can really talk honestly around the good, the bad and the ugly of parenting neurodivergent kids. And how might we share a common understanding and strategies and ways that we basically thrive through this journey, rather than survive.

Maddy: That's so fantastic to hear. I think the community is the most important part. And that saying, 'Nothing about us, without us', you've really embraced that, and Spoony as well. So it's wonderful to be able to actually talk to people who really do believe in that ethos.

Laetitia: Yes, definitely.

Maddy: So what has it been like raising a school-aged neurodivergent child? How have you helped your child manage potentially challenging environments in the school?

Laetitia: It's a very good question and it's also a very personal experience. I am not saying that this is the experience of all parents of neurodivergent children. Again, my husband and I are both migrant from France, so we have strictly no support in Australia. I am myself neurodivergent, and Zoe has high support needs. So again, I'm sharing from my perspective, I'm not saying this to impact anyone who's listening to this who has a different journey. I think it's very important to relive the experience to bring that in.

Our own journey has been a journey of discovery, I'd say. And when you discover, you have moments where you're like, "Oh my gosh, this is gold." And you have moments where you're like, "Oh my gosh, this is very, very difficult." And so we started our journey with enrolling Zoe in a public school. And again, I have nothing against the public system, but it didn't work out for Zoe. She was really bullied for being weird, and she would escape the classroom literally. She would hide under the table. It was really too much for her in terms of the sensory load, but also in terms of the accommodations that they could offer to her.

And two weeks in the cycle of school, two weeks after starting, we were invited to a meeting with the principal of the school and the teacher and offered to potentially consider the school next door, which was a Montessori school. And that's when we started our journey towards transferring Zoe into a Montessori school. And it really helped for us because of the teacher we found and the support network we had in the Montessori school, but even being in a Montessori school, it came with its own challenges.

So that's why we created Understanding Zoe because of the teacher ... 70% of the teachers, 62% in Australia, 70% in the UK, says that they are under-equipped to support kids with special needs. So it's really something that we couldn't put on the teacher. It's actually ... they're not equipped to help. That's where Understanding Zoe comes for help. And Zoe's teacher, Sarah, has been a huge advocate of Understanding Zoe from day one. When we put in her hands what was not even an MVP, was just for our family, we're quite geeky with my husband, and I have a deep interest in AI. So we just started doing this, and when we gave it to her, two weeks in she was like, "Oh my goodness, can I have this all the time and can we create it for other kids?"

So that what's really driven by her. Our journey has been a journey of ups and downs, and in my moments of big downs, I actually found the fuel to create an impact-driven business, which now is Understanding Zoe, but it really didn't come as a beautiful, easeful moment. It really came from a moment of darkness, where I was like, "I need help. I need something to help me." And I looked on the internet and couldn't find anything.

Larissa: I love that. I think, yeah, I think it's so amazing too, particularly hearing about Zoe's teacher and how involved she's been in the process too. We might take a quick break and then after the break I really want to ask you about your beta testing phase and how it helped Zoe and the wider community.

Hey, Maddy, I want to talk about something that's been a total game-changer for the neurodivergent, chronically ill, and disabled community.

Maddy: Oh, you mean Spoony?

Larissa: I do. But today I want to focus on one of their standout features, the journal for symptom tracking. Whether you're managing flare-ups, trying to spot patterns, or just need a space to unload your thoughts, Spoony's Journal is a tool you didn't know you needed.

Maddy: And it's so easy to use. You can track how you're feeling day-to-day, jot down notes about your symptoms, and even tag triggers or treatments to see what's working and what's not. Over time, it helps you make sense of what might otherwise feel totally random.

Larissa: Plus, you don't have to worry about ever feeling judged. It's private, secure, and designed with empathy in mind. It's like having a health diary that gets you.

Maddy: Honestly, it's perfect if you're looking to take charge of your health while staying in tune with yourself.

Larissa: So if you are ready to track your symptoms, find patterns, and gain some real insight into your health, download Spoony now and check out their Journal feature. It's a little extra support in your pocket right when you need it most.

Maddy: Spoony, it's more than just an app. It's your safe, stigma-free space for friends, support, and now powerful tools like symptom tracking.

Larissa: You can download it in the App Store or Google Play and try it for free today.

Understanding Zoe has been undergoing beta testing. How has it helped your daughter Zoe so far, and what does she think of the app?

Laetitia: It's such a beautiful question. We were selected as part of the Techstars Accelerator, which is, some of you may know it, but it's an American accelerator, which also exists Australia. And we invited Zoe to come to Demo Day. And she was there with her headphones and she was so proud. And of course I cried on stage when I was towards the end of my pitch because I looked at her and I was very emotional, which I am right now actually.

And so she loves it. She's like, "Thanks to Understanding Zoe, I feel that people know me better, understand me better." So for herself, she knows that. And when we have family visiting us, so we had my in-laws coming from France to Australia, she was like, "Oh, can you give them Understanding Zoe so they can understand me better." So she knows that it's going to really help her and the people around her.

And then around the beta tester and how do we involve the community, which was the other part of your question, for this part we actually have regular conversation with our beta user. We ask them, "What is the features that you love the most? What are the next feature you'd like to see? How can we make it even easier to use?" And we are doing this in conjunction with UIUX Studio, who offered to help us as a pro bono, which we're very grateful for.

So we are really going in-depth in the discovery, in understanding, and in refining what is going to be the core of the offering because we are ready on beta. We launched the product in November, so it's very, very new. We're recording this in January. So we are really refining, iterating, and learning so much, thanks to those who have spoons to give and are willing to share with us how they're using it. But some of them are just like, "You know what? It's just really helping me, but I don't have the spoons to give right now to share insights and so on." And we are happy with that as well. So we really want to co-create with those who can, and those who can't, they will come on board when they can.

Maddy: I love that. I think it is so important to include the community, whether they can contribute right now or a little bit later. I think that is accessibility in its core.

So would you have any advice to parents who are raising neurodivergent children? I know it's a bit of a broad question, but I think you are pretty equipped to give an amazing answer.

Laetitia: Oh, wow. I'm going to give an experience based on my lived experience. I'm not a therapist or a psychologist, but personally what I would say is find your village. Choose your village and find your village. I know that for us, having the right support workers surrounding us, having the right occupational therapist, the right teacher, the right friends for Zoe, the right friends for us, has been a big thing. And bringing them all on board through the app now and everyone can see what's happening. And I don't need to repeat that Zoe didn't had a good sleep and she's really struggling right now with loud smell and it may change next month. So it's like I can really have this space where everyone is on the same page. So finding your village and making sure your whole village is on the same page.

And for those of you who already have a village, which is not necessarily chosen, which may be your family or your neighbour and so on, how might you educate them. And maybe Understanding Zoe is a way or just having conversation with them. But for me, it's really about finding my village. And I know everyone say it takes a village to raise a child, but I would say when you have a neurodivergent child, it takes a city to raise a child. You need to be surrounded and be supported, and we are hoping that Understanding Zoe can help you in that, but really finding your village.

And Spoony can help you as well in finding friends and having conversation with friends. I really love the shared missions that we have, Spoony and Understanding Zoe, and I've always been advocating for you guys.

Maddy: Thank you.

Larissa: Thank you. Where do you see Understanding Zoe in a few years from now? Is this a platform you'd hope to see becoming more normalised in schools?

Laetitia: Yes. Yes, very good question. For me, it's a platform that I'd like to see as ... In school they use a reporting system, where they put grades and whatever. Zoe is in an alternative school so they don't have this, but I know that they have some report. I would love for this to be provided to every teacher, and potentially every kids because all kids have sensitivities and all kids have their own journeys.

So of course we start with neurodivergent, but it may be provided for more extended usage in the future. We start where the pain is at the moment. But when we had conversation with some parents, some of them actually raised their hand and we're like, "I don't have a neurodivergent kid. Can I use it?" I'm like, "Of course you can." It's for universal ... It's designed from the beginning for universal use, but right now we are focusing on those who don't have anything yet so we are focusing for them.

But the whole idea is that every child to feel more understood because we know that our children are our future. We hear that a lot, but it's actually the way we raise our children, the way we help them be understood, but also understand others' needs. We're really saw in Zoe classroom and also with other kids that we interacted with, that through Understanding Zoe the teacher is better equipped. So all the kids also understand the other child needs. And they're not weird anymore, they're just who they are.

Larissa: I love that. It's so true. Especially I guess the concept at the moment of so many neurodivergent adults becoming late diagnosed. I imagine if there was a platform like Understanding Zoe that they had in school. I mean, neurodivergent children go on to be neurodivergent adults. So being equipped with those tools and that deep understanding of themselves and their needs from a young age, yeah, I can't even imagine the massive difference it will make in their lives.

Where can people go to find out more about Understanding Zoe?

Laetitia: Yes, I will just connect what you just said with our big mission, which is we want to create a world where Zoe doesn't have to fight to fit in, but a world that is actually designed with Zoe in mind. So it's really like the legacy. Understanding Zoe is a legacy. Starting with our own daughter, but then impacting all the other beautiful children in the world.

So we are on Spoony. I'm joking. I am on Spoony. You can find me on Spoony.

Larissa: I'll have to add you as a friend, if I haven't already.

Laetitia: Yeah, you can add me as a friend. So you can find me on Spoony. You can also find me on LinkedIn, Laetitia Andrac, and you can go and explore our website ww.understandingzoe.com. We were actually on Meta, but we got disabled for not meeting the community guidelines and being a fake profile. So we can talk about this another day.

Larissa: Wow, yes.

Maddy: Please.

Laetitia: This happened a few days ago, so I cannot yet direct you to our Instagram anymore, but you can go on our website. And if we go back on Instagram, you'll find us there. Or if we go on another platform, you'll find out there. Because right now I am fighting the beasts to try and get back the communities that we built on Instagram.

Maddy: Oh my goodness. That has been happening so often to people in recent times, in recent weeks. I'm sorry that that's happened to you and Understanding Zoe, but we will keep an eye out for where you pop up and we'll definitely be checking out your website.

Laetitia: We're also on TikTok, actually. Sorry, we are very small on TikTok because we started recently. So if you want, you can find us on TikTok. Let me just find the handle for you because I don't even know it by heart. We are understandingzoe.app on TikTok.

Larissa: Awesome. Definitely we will give you a follow.

Laetitia: [inaudible 00:22:30] about this.

Larissa: I feel like we probably share a really similar audience and ... We definitely share a similar audience and community. So yeah, thank you so much for chatting with us today, Laetitia. It's been amazing hearing about what you're achieving with Understanding Zoe, and yeah, we can't wait to see what you and Zoe set out to achieve.

Laetitia: Thank you. Thank you so much.

Larissa: Thank you.

Maddy: Thank you so much.

Larissa: This podcast is brought to you by Spoony, a safe space for neurodivergent, chronically ill and disabled people, to make friends and find support. Spoony is the world's first social app designed with accessibility at its core. If you liked this episode, it would mean the absolute world to ask if you could hit Subscribe or share it with a friend. If you'd like to join our Spoony community, you can download the app via the App Store or Google Play. And if you'd like to keep up to date with us on social media, you can follow us by the links in the show notes.