The Power of Community: Why no Neurodivergent family should do this alone with Vanessa Gauci

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 Vanessa, welcome to The Neurodivergent Pulse podcast.

Vanessa: Hi Laetitia, it's an honour to be here today. So today we're going to talk about the power of being in community together.

Laetitia: Before we start talking about this, I would love for you to explain a bit more about how you ended up doing the work that you're doing with ACN. And if you want, you can share a bit more about the origin story of ACN.

Vanessa: Yeah, no worries. Well, first and foremost, I'm a mum. And I have five children. My third son was born and diagnosed with Down syndrome. And then as he was getting older, I was a bit mindful that some of the traits he had weren't just because he has Down syndrome. There's something else going on there. I received a newsletter from Down Syndrome Association of New South Wales and it had some characteristics of autism. And then I looked at my son and then I said to my husband, I think Adrian is autistic.

Vanessa: And I went to many doctors, but no one listened to me, because back in those days, he's 23 now, he already had a diagnosis. You look at him, he's got Down syndrome, thank you, Down syndrome, see you later. Finally, a paediatrician who was treating my younger boy, I built a relationship with him, and I said to him one day, I think that perhaps my son is autistic. And he goes, and I think perhaps you might be right. He goes, I always think it's important to listen to a mother's intuition, a mother always knows. And he goes, let's refer him on to a clinic, at the time was Tumbon Clinic in Randwick.

Vanessa: We went in, he had his assessment, we walked out and they had confirmed the diagnosis that Adrian was autistic. And even though I had that feeling and I knew and I could see the characteristics, I had a bit of a meltdown, as we often do when it comes to diagnosis. I cried, I had grief, but I was also happy because it confirmed what I was thinking all along. And once I dealt with that, it was like, okay, let's get into action, what can I do to help my son live his best life possible?

Vanessa: So like I said, Adrian's 23 now. He's non-verbal and he's in nappies, but he's out and about living his life. And I sometimes say, I wish I could go swimming every day and do what he does, but it's all good. Because of that, obviously, I was drawn to working in a space helping people, particularly with my son being non-verbal, being a voice for our autistic community.

Vanessa: So I was offered a role at Autism Community Network, and to me it felt like the greatest place to be, because it had gone full circle. I knew of Autism Community Network when they first started in 2011, and I was in a different role and visited the organisation, and thought, wow, there's nothing like this in our area, it's so needed.

Vanessa: So 2011, how it began was a father and a grandfather meeting on a playground. They had a conversation, and what did they find? Commonality, autism. From there, that child, the son and the grandson, started hanging out and playing together. And then they started talking to other parents, and other parents are like, I have an autistic child as well. So it grew from there, from those two young people who are now in their 20s themselves. We now have over 6,000 members. So I think it's because there's obviously more awareness out there, but also because there's a massive need for support.

Laetitia: Yeah. Thank you. Thank you for sharing that. And you know, you've shared publicly and here now about caring for your autistic son who is non-speaking, and really being here to support him in his journey. And there is a lot of families who are on this journey, and I just would love for you to cover a bit more, because you have seen 6,000 families across the years, and you really have the experience of seeing what's happening beneath the surface that the outside world won't necessarily see or understand about those families' journey, who support children who are autistic, and maybe some of those families, they are themselves autistic as parents, which is the case in our own family.

Vanessa: Yeah, absolutely. And the thing is that I think what we often see is the good news stories, right? So we hear about the amazing things that autistic individuals can do, which is fantastic. Autistic individuals from our groups, for example, our autistic adult groups, we have phenomenal, phenomenal people that come along to these groups, and the way they think and the things that they can create, it's just next level. And I often think as well, their honesty, and it's so important, if the world was more like some of the people that come to our groups, and just spoke honestly and from the heart, I really truly think the world would be a better place.

Vanessa: So we hear about that end of it, like my son Adrian, and like other children and adults out there. Adrian, 23, he'll always be my big baby, we've got to change his nappies. So when we go out, it's about, not just, I have a 23 year old, all my children are over 18, we should be able to just get up and go. Many of our families are in the same situation, where when they need to leave the house, well, they still have a baby bag, right? They still have to pack nappies, but adult nappies these days, wipes, spare clothes, they have to be conscious of where they're going. Is there going to be somewhere where I can change my child, my adult child who's bigger than me? Is there a suitable place so he has the dignity that he deserves when he's toileting? These are some of the things we think about. Behavioural challenges, is this place going to be too loud? Is it going to be too crowded? Is there a safe space that I can walk out to, or a room I can go to, to know that my child's okay?

Vanessa: And it's a common thread that we hear throughout our WhatsApp groups, on our Facebook supporters page, at our peer to peer carers support groups, from our parents and carers. This is what we deal with. And more often than not, you lose friends and family, because some people don't get it. Why? Why are you saying no, you can't come to this, and then at the last minute? Or because maybe my child's had a meltdown, or maybe he's had a big toileting accident, or decided he wants to be an artist and smear poo everywhere. And I know some people out there probably thinking, oh my gosh, he's speaking about something like that. But this is reality, and we need to speak about it, because this is what our parents are experiencing. So we're dealing with that, so we can't come to work, or we can't come out to a family event, or we can't go out to this meeting, because we're dealing with that. There's a constant feeling of fight, flight and freeze, of being on eggshells.

Vanessa: And imagine, right, so if something like that has occurred the night before, for example, and then the next day the person's going into work, their mental state, it's not great. And that's why I think we need to open these conversations, even in the workplace. If someone knows that they have someone working with them, a colleague who has a child who's autistic, or living with any disability where there might be challenges, just checking in to see if they're okay. Our parents, some days, don't have the energy to get out of the house. And we often see that when people come to our groups. So for example, for some of our carers, just making that first step to get out of the house is massive.

Vanessa: But offering them a hot cup of tea or coffee, which as parents we often don't get anyway, particularly when you've got little ones, it just makes all the difference. So I think that it's really, really important, and I know that you and I have spoken about this in the past, and how important it is, and we think similarly about this, is that you need to have your tribe. You need to have your tribe of people who understand you, who aren't going to judge you when you pull out of something at the last minute, who aren't going to judge you if there's a challenging situation occurring with your child in front of them. They're going to know how to help you.

Vanessa: And that's why the more conversations we have, the more we share about what's going on and what works for our child. You know, hi, I'd love to come to your party, it would be great, however, look, my child is autistic, sometimes the noise, the people, the whole sensory environment is too much. Is there any chance you might have a room that we could go to, just so I know and I feel comfortable to leave the house to come to your event? Little things can make such a big difference in the world of our children. So yeah.

Laetitia: Thank you for sharing that. And I know that you organise lots of in-person community events, and I would love to ask you for some examples or some stories of when you see those families coming together, or those young adults or those children coming together. What have you witnessed, and you're like, oh my goodness, this is why we need more in-person community? You know, in a world that is fully digital, I think in person connection can be very powerful. What have you witnessed?

Vanessa: It's so, it's so powerful. I mean, look, just the other day I was at a group, one of our autistic adult groups, on Monday evening, and this young girl came, and doesn't live with the family, she lives in supported living. So the carer dropped her off and said, look, I can't stay, you know, are you able to keep an eye? Absolutely. And at first she was very shy, but she met one of our team, and got on very well with him, and he sat with her and spoke with her, and at first she didn't want to talk too much. By the end of the night, she was singing. She got up and she sung with one of our ACN team members. And at first I was like, oh, did you want to sing tonight? Oh, no, no, no, I don't sing, no, no, no, I can't sing. And by the end of it, she got up and sung.

Vanessa: You know, we've had situations where we've got a young gentleman, oh, it's a story I love, an autistic young man, and he has selective mutism, and he only speaks in certain situations, and he'd been coming to one of our groups for a long time, and he used to, he gets on really good with one of the other girls who loves chatting. So she'll chat, he'll listen, and they just communicate via their phone, sitting side by side. So this one night, the one night I didn't go, because I'd had a surgery, I get a phone call from one of my directors who attended the group. She's like, Vanessa, oh my god, you're not going to believe it. I'm like, what? She goes, this person, he's speaking. And I'm like, no, no, what, that's amazing news. She goes, oh, look, I've stayed late because it was after nine o'clock. Our groups normally go from six to eight, but in saying that, if everyone's having fun, we'll just keep on going. And she goes, the parents' faces said it all, you know, and they were actually saying to her, can we stay and just let them talk? And she was like, absolutely, yes, absolutely you can stay. So little things like that are massive.

Vanessa: We've had people come to our groups who wouldn't leave their room, and often it starts with mum coming or dad coming to our group first to scope it out, and then we have a chat with them, we start giving them some strategies and some advice in relation to how we can slowly introduce them to Autism Community Network, and they might come to an autistic adult group and last five or ten minutes in the first instance, because as we know, that first step going anywhere is very stressful for all of us, and then come and spend five or ten minutes and then gradually build their capacity.

Vanessa: We had one girl who wouldn't leave her room. There was some self harm involved, and since she's been coming to our group, she now is running an autistic adults group for us. Her mum was shocked when she asked me, can I help you run a group? Her mum helps too, she's amazing. And now she's doing a certificate in disability and wants to be a support worker, because she's built her confidence. And that's what it's about. It's about building confidence, it's about connecting, and that's what everybody needs, regardless of being an autistic individual or not, you need that connection. And we learned that through covid, and that face to face connection, it makes all the difference.

Vanessa: And we're seeing it all the time, where we've got another young man who was coming to our groups, I mean, he needed a reference for support, and because he'd been coming to us for so long and volunteering for us, we did that, and he's working now full time, and that's something that, five years ago, perhaps mum didn't think would be possible. So there's all these different stories, that it just fills my cup when I come home, or when I'm at one of our groups and we see this happen.

Vanessa: And sometimes for other people, whose children are not, they don't have autistic children, sometimes what we think are big things are not maybe big things for them, because they just take it as, you know, their child's developmental milestones etc. But for us, it's massive. It's massive when we see one of our autistic individuals, when we say, hey guys, do we have any birthdays this month? Oh yes, it's Laetitia's birthday, and everyone will sing happy birthday. Because often our kids aren't invited to birthday parties, or if they are, they're left, sort of, alone or isolated or ignored, in school often bullied, and all that sort of thing. But at these groups, they know that they can be themselves.

Vanessa: And when you say that, and you say, okay, Laetitia's birthday, and we'll sing happy birthday, and then we say, well, would you like to share something about your birthday? You don't have to, but if you'd like to, you can. And then you might share something, it could be about trains or whatever it may be. And someone, I guarantee, in that room will like the same thing you like, and then they'll start talking, and then next time they'll come together and they start sitting together, and then eventually they swap phone numbers and there's a friendship building. It's so powerful.

Laetitia: I love that. Thank you so much for sharing. It's very powerful, and definitely we are, as human beings, craving for connection. So having this possibility to connect is really powerful. So I remember reading and hearing that through ACN community you have 85% of your families are coming from cultural and linguistically diverse backgrounds, and that is something that you build within the community. But I think a lot of families who are, you know, culturally diverse, struggle also to find connection. So how can you create this sense of connection and this sense of genuine belonging? We're all craving to belong within a group like this. So how can you allow everyone to express their diversity within a group?

Vanessa: Look, I think it's because there's no judgment here. People can come and be themselves. Anybody is welcome at ACN, and we try to make that very clear. I mean, even when people walk into our groups, we're always welcoming everyone. But I think it's about allowing people just to be themselves. And it's not about, at ACN, it doesn't matter about your religion, your sexuality, your gender, your diagnosis. At ACN, you're just a person. You're a person coming to connect with other people who get it, who are going to support you.

Vanessa: And we celebrate different things, whether it's Christmas, whether it's Eid, all the different things that we have throughout the year, and we celebrate that. Recently, obviously, Chinese New Year, at one of our groups in Hurstville, one of the facilitators brought in little gifts and were sharing gifts, and it just makes it all that special. At Easter we do things like that as well. So we try to encourage people to talk about their background, to talk about where they're coming from, because that's how we learn from each other as well. But we also try to break the stigma.

Vanessa: So when we do information sessions, for example, we just recently did one with Planet Puberty, because in some cultures talking about puberty is very hush hush. So we spoke with some of our groups, and it became a common theme, where we spoke about all of us being from different backgrounds, of who speaks about things and who doesn't. And a lot of the mums were like, you know, we weren't told, we weren't told about our periods, we weren't told about what happened. One mother told me how she rang her mum because she thought she was dying, because she was bleeding everywhere. So when we hear things like this, we're like, we need to talk about it, and we make sure we do it with partners such as Planet Puberty, to make sure it's done in a correct manner and culturally acceptable.

Vanessa: But we try to break that stigma and have those conversations, because if we don't, it's going to impact autistic individuals. We know routine is very important. We know having time to see what's happening. Like, I know for my son, if we take him away, which we're aiming to do in June, fingers crossed if all goes well, is preparing. We need to be prepared. So whether it's preparing for a holiday, whether it's preparing to go to a family member, or whether it's for our young girls, preparing them for what's happening with your body, it's so important. And so we're going to be doing a face to face one soon as well at Club Rivers, because we do have some parents as well who are, for example, single fathers from cultural backgrounds who aren't sure how to have those conversations. So we're going to plan our session around supporting those people, and then having people on hand to talk face to face through that, and then preparing, having a little bag, having pads in there, having those conversations ready to go.

Vanessa: So I think it's about, from a cultural perspective, celebrating everybody's culture, because we can learn so much, but also understanding, in some cultures, there is stigma around certain things. You know, for example, a few years ago we helped search for a young autistic boy who went missing, he had absconded from home, and I remember we were chatting with the police and the SES, and there was conversation around, you know, were the family giving enough, you know, were they giving enough information? Yes, they were trying to, but there seemed to be sort of like a bit of a wall up. And I said, well, come on, you've got a family here who's come from a war torn country, who are potentially scared of authority figures. So we need to pull someone in who can have that conversation, say, hey, look, I've been through that too. So we assisted with that, where we went in and we said, look, you know, my son himself, he's absconded, went missing for three or four hours at one point a few years ago, I know how you feel, but for the police to help you and to help find your child, we need this information, how about you let me know and I'll share it for you.

Vanessa: So sometimes we need to think, okay, where has this person come from? What trauma do they have from their past life, before they've come here? How can we help them through that trauma? Or how can we, taking into account how that trauma is impacting the situation they may be having right now with their child, whether it's absconding, whether it's behaviours in school, all these things play a part.

Laetitia: Thank you. Thank you for sharing that. So before you go, I'd love to ask you one last question. If any family is listening to this episode, and they're really wanting to do something to support themselves and support their children, what is the one thing that you would recommend for them, not to feel alone or lonely, which is what we've measured in our research, where we know that 93% feel misunderstood and isolated. So what would you recommend for them?

Vanessa: It's self care. It's finding your tribe. It's coming to a face to face meeting. We do do an online carer support group for those who can't leave the house, but realistically, that face to face is so powerful. At our groups, at our carer support groups, it's an opportunity to laugh, to cry. We share knowledge, we share the wins, we share the challenges, we share information. What speech therapist have you used, what behaviour specialist have you used, what's worked for you? Because often those with lived experience have the best experience out there. But it's also an opportunity for them to make friendships and to have a feeling of belonging, knowing that we're there with people who truly understand them.

Vanessa: And I think, even if it's popping in for half an hour, or staying for a whole two hours, or coming to a carer's activity for self care, you need to fill up your cup, because you're going to burn out. And if you burn out, how are you going to look after your child best? You must look after yourself. And honestly, I know that we've been brought up, particularly those who are a little bit older, we've been brought up that doing things for yourself can be seen as selfish, you're just looking after yourself. Well, actually, no. By looking after yourself, you're looking after your family.

Vanessa: And you need people around you who are going to lift you and are going to support you, and that you can call on, whether it's, for example, our Facebook supporter page, or our WhatsApp group, or coming to one of our groups and saying, oh my god, my son smashed the house last night, I'm exhausted, I haven't slept, I hate everything at the moment. And we're not going to judge you, and say, you know what, we get it, it sucks, it really sucks. So let's have a hot cup of tea or coffee and let's talk it through. Or maybe they just want to come and not even talk about autism, maybe they just want to come and feel like they're hanging out with their friends. Because, as we know, a lot of parents and carers, friendships are lost along the way if things get too hard. So just looking after yourself, it's the most important thing that you can do to look after your loved one.

Vanessa: And we really need to be mindful as well, looking at it these days, statistics show a lot of our carers who have an autistic child or an autistic adult also have parents or family members with dementia. We've got sandwich carers. So if you're being pulled in this direction here and you're being pulled in this direction there, one day that elastic band is going to snap. So what do you do to make sure you don't snap? You get the care and support you need. And all our care and support groups are free, we make sure of that, because we know that it's critical for carers to have that support network, so they don't have a breakdown.

Laetitia: Thank you. And definitely the sandwich generation is getting more and more coverage. So thank you for mentioning it today. So where can families listen to this podcast and find out more about ACN and follow your work and advocacy?

Vanessa: Yeah, look, definitely follow us on our social media. So we have Facebook ACN Australia, and we have Instagram ACN Australia as well. Our LinkedIn, our website, acnaustralia.org.au. Reach out to you, Laetitia, or drop, or look us up and give us a call, or just come and show up at one of our groups, because you're welcome. Everybody is welcome at ACN, and we'd love to see you there.

Laetitia: Thank you. Thank you, Vanessa, for today.

Vanessa: No worries. Thank you, Laetitia. And thank you for Understanding Zoe. The app you have created is, oh my god, it's worth its weight in gold. How efficient it is and how great it is to support parents in having one sort of spot to put all the information in, without being overwhelmed, because already life is overwhelming as it is.

Laetitia: Thank you so much, Vanessa. Thank you. Welcome to another Pulse with Zoe.

Laetitia: Hey Zoe, we are talking about getting together with other autistic children or adults. How does it feel for you to surround yourself with your own kind?

Zoe: It feels nice because they feel a little like me. They're misunderstood by many people.

Laetitia: And what do you love the most in those moments with them?

Zoe: Well, we share basically the same feelings sometimes, and we feel like we understand each other.

Laetitia: Thank you so much for this Pulse.

Zoe: 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