Finding belonging in the chaos: The power of peer support for Neurodivergent families with Kristy Cartan & Eliza Hoare

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, and welcome to The Neurodivergent Pulse. It's lovely to welcome the both of you to share a bit more about online support, and how that can happen for neurodivergent families, neurodivergent folks. But before we dive into today's topic, I would love for all of you to introduce yourselves, because Belongside Families, which you both work for, describe itself as family led. So I would love for you to share with us your journey.

Kristy: Do you want to go first, Eliza, or shall I?

Eliza: So I'm a parent of three amazing ADHD little people, and I guess I came to Belongside Families just desperate for information, wanting to know how I could support my kids. And along the way, I found out about myself as well. So I'm AuDHD, which, sorry, Autistic and ADHD, if you haven't heard that before, a blend.

Eliza: And I just loved it. I mean, it was a space that I found myself really comfortable in. I really enjoyed all the learning. I liked contributing. Me being me, I kind of just couldn't shut up every workshop and stuff, because I love that learning and I love to share and I love to have these conversations. And I guess that unable to shut upness was kind of wonderful for me, because it showed my passion showed through, and I was asked if I wanted to come on board and work with Belongside. So I've been really thrilled to do that. It's really a joy for me. I love it.

Laetitia: And your energy definitely shines through. Wonderful, Kristy, what about you? What's been your journey?

Kristy: Oh, I love the unable to shut upness. I actually came through Belongside. Surprisingly, it wasn't for my own child. So like Eliza, I have a young human, I only have one, not three, I've got one. He's an ADHDer. Along the way, I found out that that is me too. He got it from his mama.

Kristy: But it was way back in the early days for us, and I was struggling myself. I couldn't figure out how to manage everything myself, and I felt like I just wasn't looking after myself. And I had a friend who told me about this healthy mothers, healthy families programme. I was like, what is this? And she told me it was through Belongside Families. I went and did that, and I made my first doctor's appointment in five years. It helped me centre back to myself, and then it just kept going on, like with the learning about our families and connecting with peer groups.

Kristy: Also, like Eliza, I cannot shut up. But I was asked to join the team as, I think, a warm voice of lived experience. I'm a pretty nice human being, I think most of us are, but I found that I was able to relate to so many people. So yeah, they asked me to come on board as a facilitator, and it has just gone strength from strength from there. It's like I genuinely love my job. I love the work we do.

Laetitia: And I love the work you do. It's wonderful to meet both of you. I've heard so many beautiful things about the both of you. So it's lovely to have you on the podcast, and I know we're going to have a beautiful conversation. So before we get into online support, I think it's important to know that online groups and online support look different depending on which group you join. So with Belongside Families, as I said, it's family led, and that's how they describe their mission. So what does that actually mean in the day to day, and how does it shape the way you show up for parents through those online peer groups, online support groups? How does that define everything?

Kristy: I love this question, because the thing is, family led can sound like a bit buzzwordy, right? Like something you see on an advertisement, and you go, all right, but what does that actually mean? Basically, for us it's pretty simple. We are the families. Every person on our team is a parent or a carer of a child with disability, developmental delay, autism. Some of us are disabled too. Like we said, I'm ADHD, so there's no clocking off from this. It's just in my life.

Kristy: And you know, we get it. The school calls, the NDIS reviews, the waiting, the advocating when you're already exhausted, but you still need to make school lunches, and you've got to find your kid's favourite Squishmallow, and you're still listening to all the facts that they're spouting about Minecraft. So we're not guessing what families need. We're living it alongside them.

Kristy: But that said, it's not just our team we're relying on. We're listening to the families, the parents, the carers that are in our community, and we're really responsive to our community, and I'm really, really proud of that fact. We've had parents saying school is really hard right now, so that shapes the topics we talk about in our peer groups. It shapes the webinars and guest speakers we get coming in. It shapes the resources we create. It shapes what workshops we run that term. So if people are feeling isolated, we really lean into peer connection, and that comes from being around other people who really understand this life.

Kristy: And I think a good example of that responsiveness, and that following that family led, is we have a programme called one on one connect, where you actually get to call in and talk to another human being. And this came from a family telling us, I just need someone to talk this through, someone who gets it, someone who's going to help me figure out what the next steps are, but I don't have to explain the whole situation, because they already have some basic understanding there.

Kristy: So I think that's very much that family led philosophy, and that flexibility, because we all know nothing about our lives is neat. It's not predictable. We would like it to be, but it's not. So how you access support shouldn't have to be like that either. So yeah, family led isn't just a tagline. It means we're not sitting above families, we're actually beside them. Everything we offer comes from that place, which I think is really important.

Laetitia: Beautiful, I love it. And it's really what I think is more and more needed in the space, is the anchoring into the lived experience and the shared understanding, where, as you said, you don't have to explain everything for someone else to either not understand you, gaslight you, or just ask more questions than you want to answer. You actually want to be the one feeling supported. So I just love the way you framed it. And something that we share as a core value with Understanding Zoe and Belongside Families is the neuroaffirming approach.

Laetitia: So that guides me to the next question, which is, what does a neuroaffirming approach, a neurodiversity affirming paradigm approach, look like when you're supporting families in an online space, and why does that distinction matter so much? Because I want to make sure that our listeners know that there are safe spaces and not so safe spaces online. So would you like to share a bit with us about what it means, and then why that's so important?

Eliza: Yeah, look, that's fair enough. Everyone is kind of claiming to be neuroaffirming right now, so it's good to ask what services mean by that, and how they embody it, so we can know, is that really going to be an affirming support for my child? But even when we know what that looks like for our kids, then how can we apply it for ourselves and for our families?

Eliza: So at Belongside, we know that some of our families are noticing, hey, maybe my child is holding up a mirror for me. Maybe some of their challenges are my challenges too. And we do have lots of parents, self included, that have gone on to investigate the possibilities of neurodivergence for themselves, maybe pursuing diagnosis, or maybe just recognising a need to accommodate themselves in their way of learning, of socialising, and managing the fluctuations in capacity that we have day to day.

Eliza: So we take a neuroaffirming approach to online peer support by starting with the ways that people in the group might simply process information. We don't want to just tolerate different ways of processing, we want to design for those ways from the ground up. So we try to move away from the idea that there is one right way to show up.

Eliza: When we're putting together a workshop, this looks like sensory and cognitive accessibility. So right at the very start, you're going to be told, camera on or off is fine. Use the chat box if speaking out loud isn't going to work for you tonight. Feel free to move your body, use fidgets. Sometimes we have parents that will come and listen while they're folding their laundry, or doodling, or knitting, or whatever, and that's totally fine.

Eliza: We will also provide resources, so cheat sheets, case studies, templates, because we don't expect people to remember everything. We know that those valuable conversations we're having might also have a component of cognitive load. There's that multitasking element of processing information while you're also showing, oh yes, I'm being attentive, I'm participating. And for some of us, that's really, really hard.

Eliza: And we don't want parents to have to mask. A lot of us have absorbed this idea that how we connect, or the ways that we listen, the ways that we learn, are somehow wrong. So when we can create a space in our workshop that says, just come as you are, we're not saying that to be friendly, we're actually lowering a barrier to learning. I think that's why it's really important to make that distinction.

Eliza: If a parent isn't exhausted by trying to sit still, or trying to make eye contact, or to look like they're engaged, or to pretend that the environment around them is totally peaceful, if there's going to be no interruptions, then they can have the capacity to engage with the content and to connect with others that are going through similar things. So that's the value there.

Laetitia: I love it. Thank you for sharing this, and it's really something that goes to everything. So anyone who's listening to this, in understanding how we can bring that into the education approach, how we can bring that into the online learning approach, how we can bring that into university, into the workplace for meetings and so on. I really love this affirming lens that you put here, and creating a sense of safety so that we can unmask as adults and as children. Love it.

Laetitia: So that's again a beautiful way for us to go back to you, Kristy, and maybe you're not the one answering this question, sorry for throwing it at you, but the themes that you mentioned that are shaping the topics of Belongside Families' workshops and so on. What are the themes that you're hearing the most right now from families, and what do those tell us about what's missing in the support landscape in Australia mostly? But then maybe you also have an idea outside of Australia.

Kristy: Yeah, look, honestly, the biggest thing we're hearing right now is exhaustion, isolation and a lot of fear. Parents are tired, and not just tired, but bone weary. The kind where you're holding everything together on the outside, but underneath you're like that little duck swimming, there's a lot going on. There's this real fear about the future, changes to systems, uncertainty, and trying to figure out what's actually true and what's helpful for you. So families are spending so much time just trying to navigate everything on their own, and it is overwhelming, it is so much.

Kristy: So I think something that really stays with me at the moment is what happens when parents come into a peer group for the first time. I've heard people say, I've never actually spoken to other people who get this before, or I've never said this out loud before. Because sometimes it doesn't feel like you're around other people who get what you're going to say, and you might feel like there's going to be judgment.

Kristy: We've had these really raw moments, where someone who's been holding everything together for so long, and when they're sitting in that space where they don't have to explain, they don't have to justify, they don't have to hold everything together, and they just kind of fall apart a little bit, but in a really good way, because they're finally being seen, and they're being held by people who get it.

Kristy: And we're seeing that this is especially true for families who are in regional, rural and remote areas, where services are limited, wait lists ridiculously long, and even just finding another parent who understands feels impossible. So when people hop on a line and suddenly there are people across from them on the screen nodding along and sharing those similar experiences, it's life changing to know that you're not so alone, you're not sitting in that isolation.

Kristy: I think that's one of the beautiful things, that even though a lot of these groups are online, it works. You don't have to get everybody out the door, which we know is a mammoth task in itself. You could be at home in your jammies or your trackies, no one cares how you're dressed. You're still able to connect with people who see you and get you. And I think that's a joy. I honestly wish that there were more of these spaces, because that connection, when it happens, you can visibly see the weight lift from some people, and we're seeing friendships blossom between people in different parts of the country.

Kristy: And I think that tells a lot about what's missing. It's not just this desperate need for more information and more services, they are desperately and sorely needed, but it's a connection as well. It's the parents having that space where they feel safe and understood, and not by themselves. So yeah, it's that connection. I think it matters so much more than we realise at times. I really do.

Laetitia: Completely. And with that, I really feel from my own lived experience exactly what you described. And through the research we did on 191 families, which we called Making the Invisible Visible last year, we realised that 93% of the respondents, who were parents of neurodivergent children, said they felt misunderstood and invisible. And this sense of isolation and overwhelm came back very highly ranked as well, in terms of percentage.

Laetitia: And as you've mentioned, you're ADHD, and your child is as well, which is my journey as well, it's really very often. So in our research, 63% of the parents identify as neurodivergent while raising neurodivergent kiddos. So you have to navigate your own neurodivergence whilst supporting a neurodivergent kiddo, and this is the thing that can really get you feeling misunderstood by many, and invisible.

Laetitia: And finding those connections, you know, just here being on the screen, three ADHD, or raising ADHD children, I'm like, yeah, this is not the topic, let's not go off track, this is my ADHD brain, let's go off track. No, we follow the question.

Laetitia: So I have another question for you now, which is, how do you create, because you know, it's like, great, online support, I'm in a regional area, would love to join this, but how do I feel safe, how do we create this genuine sense of safety? Because we all know that some online spaces may not be so safe for us. So how do you create this genuine sense of safety and this sense of belonging in an online environment, potentially for a family who may have been burnt before? We unfortunately see so many unsafe spaces. So how do you create that genuine sense of safety?

Eliza: Yeah, I think that's a big one, because a lot of the families that we meet have been through the ringer. They've felt judged. They felt like they got this perception that they're not parenting the right way, or that there's one right way. Or they've just been in groups that don't feel safe.

Eliza: So for us, creating safety starts with a really clear set of guidelines. We aren't here to push one particular approach to parenting or to disability support. We're actually really big on the idea that the parent is the expert on their own unique child. So my job, Kristy's job, all the facilitators, we just want to empower the parents' decision making, to look at what aligns with their personal values, and then bring that to how they support their kid, or how they advocate.

Eliza: And because we're online, we're coming from all over the place. We have totally different cultural contexts, different financial situations, different access to services based on where we live. We're so eclectic, and I think we really value that difference. We're not aiming to collect a room full of people who think exactly the same. The difference in perspective in the groups is where the value is.

Eliza: So sometimes that sense of belonging can come from the solidarity. It's quite refreshing to have a space where you can say, hey, I am having the crappiest week, or I'm so over this particular battle, and you will know that someone's going to get it, way more than say a typical parents' group, where the conversations are more about textbook milestones, or whether it's better to opt for after school ballet or French language classes for enrichment.

Eliza: But that said, we're also really mindful of how we share the battles, the challenges. We talk about sharing with care. We know that some of us are carrying a lot, and we don't want to offload in a way that might be harmful to others in the group. So our spaces are all facilitated, they are moderated, and we make sure that we're directing the conversation in a way that's really quite positive and strength based. We want to focus on solutions to those common challenges that we all face.

Eliza: Another thing is we really love to talk about who our kids actually are. So that's stuff like, what are they good at, what do they like, what brings the family joy? And I think that's such a relief for parents as well, when so many spaces, so many of the service providers, even the educators, might be just focusing the discourse on deficits, or telling you all the things that you should be doing to get your child to catch up.

Eliza: But we're not positivity washing either, that's not something we want to do. If a parent is exhausted and they're burnt out, we acknowledge that. And if it's a season where peer support just isn't enough, then we'll help them to connect to, say, one on one counselling, or specific advocacy advice, or something else that's really specific to their needs.

Eliza: But ultimately, establishing that safety that we want in the groups, it's about reserving judgment, and it's reinforcement that everyone does belong here. You don't have to be a certain type of parent, or type of advocate, or type of person, to have a seat at the table with us. We all belong.

Laetitia: I love that, I love that. It's right there in the name, right, Belongside. But it's really, how do we create that sense of safety, and then trust can be built. So maybe I'll just jump to another question in the list, which is about, you know, we talked about, and we had you on Understanding Zoe as well, around holding both evidence based practices and being anchored in lived experience. So how do you balance those two, and how do we make sure that our listeners start understanding that these both have a beautiful harmony to find together, and it's not one or the other, they can live together?

Kristy: Yeah, absolutely. I don't think it's a balancing act. I don't think it's, you know, that one form of information has to sit countering the other. As for that evidence informed practice, I want to say that the premise of all the information that we pass on is, it does need to be based on evidence. It needs to be drawn from the right resources, and really quite objective, not swayed by our personal opinions.

Kristy: But then we'll get that information, and we will run that through, so we've got, here's what the research says, here's the best practice guidelines, here's the recommended approach. Then we're going to run that through the filter of lived experience. So we do feel a serious responsibility to make sure everything that we are putting out there has a solid foundation. It's grounded in actual studies, it's grounded in professional practice.

Kristy: But the thing is, research can be really dry, or quite often it's written by people who have never actually tried to co-regulate a child when they're hitting their own sensory threshold. So if I'm creating a resource or a scenario for a workshop, I'm constantly asking things like, does this actually work when there are siblings in the picture too? Does it work if the family doesn't have a backyard? Does it work at 5pm on a Tuesday, when everyone's hungry and the baby is screaming?

Kristy: If the research says do X, but lived experience tells us that X is actually impossible for a parent in burnout, or it doesn't respect that child's autonomy, then we're going to pivot. So we want to get creative with ways that the concept can actually realistically work. We've got the what, but then we use that lived experience to find the how. And we might even ask the participants in a group for different examples of how they've made it work. And that's an opportunity for that diversity of experience to really shine.

Kristy: A great example of that is our workshop for Autistic families. We take those high level concepts, like nervous system regulation, and then we turn them into something that takes into account the realities of supporting your own needs, while you're supporting your child, while you're probably also trying to work, and maintain relationships, and deal with school and therapies. All that stuff doesn't seem to get accounted for in combination, unless you have that lived experience.

Kristy: So we're going to use the evidence to explain why something is happening when we put a resource out there, or we do a workshop, but then we use our lived experience to create the how, and the way that people can actually apply that understanding, given that our lives are messy. Our lives are complicated. This is the reality.

Laetitia: And I think that's what's missing many times, actually. You just read this advice online, or you read this great strategy, or this great tactic, or this great thing, and then you're like, but in our context, it's inapplicable. And then this is where the sense of, you know, not providing what you should provide, all of those shoulds and coulds and woulds, but actually you just can't. So finding ways that can work for everyone is actually beautiful, and I love what you just said.

Laetitia: So I'm just going to move to the final question. I would love for any of you to share something that you've witnessed, maybe it's a moment, maybe it's a conversation, that made you think, this is what a truly supportive online space looks like, this is what truly online safety looks like.

Kristy: Yeah, look, I'm happy to do this one, Eliza, because it didn't happen just recently, actually, and it has been amazing. It was in one of our peer groups. We had a couple of people who hadn't met each other before, and it was a really quiet group. There were just four of us in there. We were having this great chat, and it was around one of those heavy topics, it was around school. We know how hard this landscape is for us neurodivergent humans and our children. So there are so many layers to this, right?

Kristy: But then we had these three parents who came in, and they were all communicating in different ways. We had somebody in chat, we had somebody on camera nattering away, and we had somebody doing a combination of both. And these three people truly saw each other, and the struggles that they were having at that time.

Kristy: I am not going to lie, I actually got really teary at one point, nice teary, because hearing how they saw each other's strengths, and they saw the tough times that were happening, that they were genuinely there with the most amazing care for each other. The way they showed up with people that they had just met absolutely blew my mind. I started to cry, they started to cry, it was lovely. It sounds like, oh god, I'm going to cry, but it was nice crying.

Kristy: But it was just so nice to see how safe they felt to be that vulnerable, and to be able to crack this big hard exterior open, and to show people what is happening on the inside. And then, to be able to feel connected enough with somebody to be able to receive what they were saying, so they were able to problem solve for each other. It just felt so safe and warm. It felt like I witnessed something incredibly special, and this doesn't happen all the time, and it was just really unique.

Kristy: These people actually went off, and they were like, can we stay in touch with each other, they wanted to form their own little group, but they actually just talk to each other online as well now. And these are people from all different parts of Australia. That blew my mind, and I just thought, this is why we do this work, this is why we're here. It made my heart so full. I've been telling everybody about it, like this was amazing, this is why we do this.

Kristy: And yeah, they even messaged afterwards to say thank you, because they hadn't felt seen. They had felt isolated. And I think that's again so much of this, this isolation, and then getting this connection. And yeah, being seen, feeling safe, but also being open enough to the experience as well.

Laetitia: I love that. Thank you for sharing, Kristy.

Kristy: You're welcome.

Eliza: Do I go next? Well, I actually had a similar thing. I had a group recently, which was a bit of a small group, and I was like, oh, not many people showed up. But sometimes it doesn't matter about the size of the group, and it was just a little intimate group that night. And at the end of it, one of the women in it was saying, this has been so refreshing, to be in a space with, I'm guessing, mostly neurodivergent women, who again, who get it. We so often get this message that somehow we're doing it wrong, we're handling our children's struggles wrong, or we're being too helicopterish or something.

Eliza: That's just disability support, it's not helicopter parenting. That's the looking from the outside. I think that people who don't have that experience do not get it, and can really misread it. So it is really refreshing to be in a space where other people understand, and can see what you're doing, and can see the support needs that exist within your family, and the way that you're approaching it, and just the struggle. Not wanting to be overbearing, wanting to foster independence, wanting to do all the things to help your child feel nurtured and to thrive.

Eliza: It's a battle that's not common to all typical parenting. So when you're in that space with other people who understand where you're coming from, it is refreshing.

Kristy: That's a great word, it's refreshing. It's what she said.

Laetitia: Yeah, and as I said, it's backed by data. It's like 93% of those families feel misunderstood and invisible. So that's definitely a solution, that gathering with your neurodivergent peers who actually understand what you're going through. So you finally feel visible and understood. I love that.

Laetitia: So for anyone who's listening to this podcast, like, oh my gosh, I would love to be in an online space like this, and explore Belongside Families, how can they access resources and learn more about Belongside Families' work? Belongside Families is everywhere on our website as well, it's a partner, and we highly support them, but you can access them also through the show notes. So would you mind sharing any way they can access the support?

Speaker: Absolutely. Absolutely. The easiest way, hop on our website. From there, you can immediately sign up to our newsletter, if you're like, I just want to do a vibe check, see if this is the right place for me. You can check out our socials, Belongside Families. But yeah, directly through our website, you can get to all of our events. And everything's free, by the way, folks. It's all free support. That's one huge thing that we probably should have told you all.

Speaker: But yeah, you can access immediately, so you can jump onto our website, you can look at our events, and you can be like, oh wow, these are the events that they have coming up for the rest of the term. You can access a library of webinars that we have previously recorded. We have a whole library specifically dedicated to our Autistic and neurodivergent kiddos and families. We have an Autistic families workshop coming up. We've got a whole heap of stuff. So yeah, the best way to connect with us, website, socials, it's all there. We're super easy to find.

Laetitia: We'll put all of this in the show notes. Thank you so much, Eliza and Kristy, for joining me today. It was lovely to meet you, and for you to share your experience on the podcast.

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.com.