Online safety and connection with neurodivergent kids with Shadia Hancock

Laetitia: Welcome to 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.

Laetitia: 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, Shadia. Thank you so much for joining the Neurodivergent Pulse podcast.

Shadia: Thanks for having me, Laetitia. It's really exciting to be here, and it's a topic very close to my heart, so.

Laetitia: Very special topic, and I'm grateful that we got introduced through a joint relationship from Beyond Side Families was when I wanted to talk about safety online and how can we create online safety for neurodivergent folks, children, families, adults. Your name popped up and I was like, "Okay, I need to speak to them."

Laetitia: So can you tell us how everything you're doing today came together and why online safety became a focus for you?

Shadia: So, it's been a very interesting sort of journey and not necessarily what I expected would happen, but really lovely to see a lot of the world starting to collide now. I started getting involved in Autistic self-advocacy around the age of 14, and so that's about 12 years ago, which seems like a really long time ago now.

Shadia: But it was really, it started from me trying to explain to my teachers actually things that I was needing that were less obvious in the classroom, and based on the feedback given, one of the teachers actually suggested that I start my own consultancy and advocacy business.

Shadia: So with his support, that became reality, and I wanted to find a way to channel the advocacy in a more professional capacity. And I also love animals, so. And I know that a lot of Autistic people and neurodivergent people have an affinity with animals. So I started researching ways to merge those two interests and came across animal-assisted services.

Shadia: Back then, there wasn't as much information as there is now, but one of the pathways that was suggested was through allied health. So that's why I then went into speech pathology, and from there I started getting involved with some mentoring and other Autistic-led and neurodivergent-led groups like Next Level Collaboration.

Shadia: So I've been involved with them now since 2020, so around the start of COVID. And so, online interactions is a key part of not just my work life, but my personal life as well, and I know that that's something that comes up very often, not only with, you know, my friends, but also the participants I feel lucky to work with.

Shadia: And when you think about even the history of the autism rights movement, you know, a lot of that started on online forums in the 1990s because Autistic people finally had a space where they could be heard and listened to. For some, you know, oral communication or, you know, in-person communication is just simply not accessible, and it gave them a way to connect with each other.

Shadia: So I think that's where I think there is a lot of discourse and discussion that needs to be held about navigating online spaces. I think also for so many of us, a lot of face-to-face interactions, there's just so many more barriers to consider, such as, you know, age ranges, what setting we're exposed to peers, and the fact that for a lot of us, the way we interact, it's not always compatible with those settings.

Shadia: And so I've personally been active in online space since around my early teen years, and a lot of my connections I do maintain online, and some I've ended up getting to know in person as well. But it's definitely been a huge part of my life and something that, you know, I encourage open conversations about for our community because I think without it, it would be a lot harder to maintain contact.

Shadia: And you think about even, you know, COVID, that that was the way that we all maintained connection when we weren't able to interact in person and things like that. So, yeah, it's really great that there's more conversations being held about this, particularly now that, I guess since even, you know, 10 years ago, there's a lot more online spaces just to navigate.

Shadia: So, you know, I can appreciate that there's lots of different perspectives with this.

Laetitia: Mm. And I think, not being an expert in the field at all, I feel the pendulum is going the other way. Like before, when the online space was not so developed and everyone's way of interacting, we could use it for the community as a way to actually feel safe and interact with a group of peer and interact in a different way, you know, in written communication or when we have capacity to interact, and if we don't interact for a few weeks, it's fine.

Laetitia: Whereas now that online is kind of used by everyone, there is lots of people saying how it is risky for community and for neurodivergent and so on. I feel like we swing, and I don't know if you have the same feeling, so I just would love to hear from you, like, what have you felt being a change?

Laetitia: It's just I've been a change as an observer, not as an expert. And from where you sit, what is actually happening right now in the online space, and what does the conversation around online spaces are unsafe, and we need to put neurodivergent folks offline when actually online has been a safe space for quite some time?

Shadia: Yeah, and I think that goes back to that point where, you know, again, so many people I work with and also my connections, historically, in-person interactions have not been accessible for them. So, and I mean, in terms of online safety, I think that's an area that everyone is still navigating at the moment regardless of neurodivergence, and it's a lifetime learning curve.

Shadia: Mm-hmm. I think, you know, and I respect that there are lots of different sort of perspectives when it comes to that, but I do feel that there's a lot of sort of emphasis in general on all of the negative aspects with being online, like, you know, talks about sort of, you know, brain rot and, you know, fixations, you know, online addictions, and things like that.

Shadia: And I can, of course, understand that there are aspects to being online that are challenging and certainly something new that we're all as a society learning to navigate. But I think when you look at for some of the people I work with, that's given them a chance to connect authentically with others where it might not have been possible.

Shadia: So for example, you know, if they can't attend school, that might be the way that they connect with peers, you know, with similar interests. Maybe it's to do with a degree of social exhaustion. Like, you know, when you've done a whole day of work or school, sometimes it's just too effortful to then physically go and interact with someone versus playing a game online together or using an instant messaging chat.

Shadia: Some people also find it easier to have that time to process online communication where, you know, when you consider that when we're talking to one another, that's sort of that instantaneous conversation, often fast-paced. Whereas if you receive a message, you know, that can give you time to read it through, process it and reply, and that form of written communication can be more accessible for a lot of Autistic people.

Shadia: So I think it's really important also to consider when we're discussing neurodivergence and online safety, that it's not just something that kids or neurodivergent children face. I mean, a lot of neurotypical adults are also experiencing similar challenges with online spaces to kids, but I think it's, as I said, having that open dialogue and I'm sort of of the opinion of viewing it not as inherently good or bad, but like other sort of forms of technology, it's a tool there that we need to then learn to use, you know, in an informed manner and, you know, educate ourselves on how we can use that effectively.

Shadia: When you consider that historically when, you know, books were introduced and things like, well, think books were more read, there was sort of a worry that kids were spending a lot of time reading and not, you know, playing as much and things like that. Whereas nowadays you don't really hear the same concern.

Shadia: So I think it's something that I feel is gonna take time, and I don't necessarily have the answers to that either. But I sort of try and approach it from a curiosity lens, and what can we learn from navigating these experiences? 'Cause the reality is it's not going away anytime soon. So, you know, as adults, we are expected, for example, in the workplace, to navigate technology and to manage technology.

Shadia: And yes, it comes with its own set of challenges, but from an accessibility point of view, there are also some really great positives, so.

Laetitia: I just love everything you said, and I could just listen to you for hours talking about this because this is so aligned with what I say about AI. I'm an AI expert, and there is this beautiful book which maybe you've read, which is Tools and Weapons: The Promise and the Peril of the Digital Age.

Laetitia: And what I love to say is, and it's including robotics, it's including any advancement, you know, biotech and all of that, it depends how you use the tech evolution. It can be a tool or it can be a weapon. So, as you said so beautifully, it's really about how do you use it and are you conscious about the risk, and how do you create that sense of safety?

Laetitia: Which is a beautiful segue to a question that I have for you, which I had prepared, which is when a family comes to me worried about their child being online, and I know, like, I have those questions asked to me quite often being like, "Oh, how do you deal with the fact that your child is often on tablets and interacting more with the online world than the physical world?"

Laetitia: And there is these neuro norms and expectations that this is the way we should interact in society. So what are the things that actually help build safety when the child or the young adult or even an adult is using online as a space rather than restricting it? How can we help them understand how it can be a tool rather than a weapon?

Laetitia: Do you have any tips around that?

Shadia: Yeah. Absolutely. And, you know, I've been pondering about this question and thinking about my own experiences growing up really, you know, when it was starting to become more of a mainstream thing, I guess. And something that, you know, I sort of was lucky to go to sort of an alternate school model.

Shadia: One of the things that they really emphasised was understanding why recommendations are being made and why, you know, for example, there are certain rules that are being put in place. And I know that Alfie Kohn, in his book Punished by Rewards, that was written in the late 1990s, still so relevant, and he talks about that there are, of course, things in life that we kind of have to do.

Shadia: Like, you know, there's a lot of things that we have to do ourselves that's frankly just so, you know, not fun. But we can reason with ourselves, and we know why we have to do that and why that's important for us, you know, in terms of safety or self-care. And I think it's really important for kids to have that understanding.

Shadia: And so I always, and, you know, obviously having a really good support team to help navigate that space. 'Cause I'm also aware that, you know, in this discourse, there seems to be quite a heavy emphasis on the family navigating this. And I just worry that sometimes that might put pressure, thinking it's all on the family to navigate this and the family to fix.

Shadia: And I actually think it's that idea of that ongoing conversation and, for example, with myself, having that open dialogue and sharing things in a non-judgemental way and explaining why. Because what I'm always mindful of is that we will become adults one day, and we're not always gonna have necessarily people around us to guide our decisions, so we're not informed as to why certain things have been brought up or there are certain parameters.

Shadia: It's sort of, I mean, there are adults my age I know that struggle with this as well, you know, the self-monitoring aspect and things like that. So I think if you're able to, you know, obviously with what's developmentally reasonable for children, there's obviously some things that, you know, as parents, you know, you take on that responsibility for the child.

Shadia: But I think just having that open conversation and going, "Why is it that I've noticed maybe a change in their online engagement? Is there, you know, what's been happening in their environment?" And checking in with them and saying like, "I've noticed that, you know, when you've been coming home from school, you seem to be going on your game a lot.

Shadia: You know, is there anything that you wanna talk through?" Or even getting them to show you, you know, what they love about the game so much. And I think then not only are you able to figure out the reason behind disengagement, but they're building skills to kind of learn to monitor themselves and also not just be thinking, "Oh, I've been told that I've had enough iPad time," or things going, "Okay, well, I need this to regulate."

Shadia: Or, you know, if there's sleep issues or things, understanding how tech use can affect that, I think sets them up for more success, as seeing it as like an ongoing learning journey. And even just saying like, you know, when I was growing up, I was told, you know, adults also struggle with this.

Shadia: It's not just you. It's something that we all have to navigate together and check in with each other. And I think involving them in those decisions really helps too. Because I can appreciate that, you know, I'm always wanting to know the why behind things. And if you explain it to me in a way that, you know, I can see the reasoning behind it, and I can appreciate, okay, yes, this is the reason.

Shadia: I'm probably more likely to be able to cope with that. I think as well, particularly with neurodivergent individuals who may not have a large sort of social network or may have very specific interest related to online engagement, I think when we are talking about, again, online use, it's really important to understand the purpose that it's serving for them.

Shadia: So, you know, maybe, as I said, after school, it's a way to decompress after a long day, or maybe, you know, delving into something really predictable and in your control after having to deal with lots of things that aren't in your control in the day is also a form of trying to self-regulate as well.

Shadia: So I think it's really important to stay curious, and as I said, trying to view it from a neutral lens and trying to see it from their point of view, I think can be really helpful as well for the child, so then they're not feeling judged. And I think this is particularly important when we consider, you know, for example, people who have a persistent drive for autonomy, or also known as pathological avoidance.

Shadia: I can imagine that for families navigating this when they're told to, you know, have certain restrictions in place for tech use, that can also increase the conflict within the home, which then is that sort of balancing act of, "Oh, where do I draw the line here?" So I think it has to be a community effort.

Laetitia: Yeah.

Laetitia: Hmm. Wow. So true. Being PDA and raising PDA, I'm telling you, I really, really hear you. It feels so good to be heard. Around, if you put restriction in place, actually it's going to be even, you know, counterproductive rather than educating, understanding, curiosity, connection, like everything you said. So powerful.

Laetitia: Thank you so much for sharing that with us. And I love also what you said about parents feeling that pressure on our shoulder, and I think it's the way Western society is built nowadays, where it's like you raise your child by yourself in a way. It's like it's your responsibility, and you have a care team around you, but they're not in the day-to-day with you.

Laetitia: You have teachers, but they're not in the day-to-day with you. You have family members who maybe not live under the same roof anymore. So this is a thing where, what could they take away from this conversation where they can just, you know, feel this kind of, "I'm doing great," you know? Or anything you'd like to share with them, always an individual who is like, "Oh my gosh, I feel the peer pressure of getting offline and doing this and that."

Laetitia: What could we tell them to just kind of, it is okay?

Shadia: I think I always like to emphasise that it's not, you're not alone. So it can feel that way, but there's a whole community of neurodivergent families out there who are navigating these spaces. And it is, I can appreciate it must be so tricky when you're getting conflicting information about not just, you know, online, but raising children, when in reality, you know, your child is the child in front of you and an individual and, you know, knows as a child know themselves a bit, but you also spend the most time as parents around your children.

Shadia: So I think, I don't think there's necessarily any right or wrong approaches beyond, you know, punishment. I would say that's a pretty hard fast no. But I think it's all about what's gonna work best for your child. And that might take a trial and error approach too. I know that there's, you know, I think normalising even for your kid that sometimes mistakes happen, or sometimes you might try something and it doesn't really feel great or work out well.

Shadia: But I'm of the opinion that how much better to do that in a safe environment with a trusted person where you can share that experience with them and debrief and reflect in a non-judgemental space rather than, you know, let's say at a much older age where you're then having to navigate this on your own and may not know how to talk about it or reflect on your experiences.

Shadia: So I think sometimes just having the permission to go, it's, you're not gonna be perfect. It's really important for your child as well to know that, because if things happen in the future, then they're more likely to be comfortable asking for help and sharing that with you. And I think, as I was saying before, this is an area of conversation that's impacting the entire community.

Shadia: I think, you know, we're all learning how to navigate these spaces and I think, you know, if there's sort of networks that you can develop, if it's with other neurodivergent families or parents or, you know, a neurodiversity-friendly health team, I think having those positive connections, I think can form a really protective barrier, or facilitate, you know, that feelings of safety going forward.

Shadia: And yeah, I think it's just, I think that I always like to just ask them, what does it mean to you? Because sometimes that can give you a real eye-opener on how the child's viewing it from their perspective as well. So I think it's, yeah, there's no hard and fast rules. I think it's just something that will evolve over time as your child grows and you grow with your child.

Laetitia: Yes.

Laetitia: And nurturing, you know, the bond that exists through an understanding of their special interest. I love when you said, you know, what are you loving about this game? Or what are you loving about going into this forum? Or what are you loving about this conversation you have online?

Laetitia: Like, really kind of understanding what's happening behind for them to just be able to understand that for themselves and also for you to understand better. I loved it. Thank you so much, Shadia, for coming today. So for anyone who's listening to this and they wanna hear more about your work and learn more about Autism Actually, what is the best way for them to connect with you?

Shadia: Yeah, I do have a website, so it's www.autismactually.com.au. And I'm also on Instagram and Facebook. Instagram's, the tag is autismactuallyau, and Facebook's Autism Actually, so hopefully it should be easy to find me.

Laetitia: Amazing. And we'll put all the links in the show notes for everyone to connect with you and learn more from your experience, expertise, and advocacy.

Laetitia: Thank you so much for joining the podcast today.

Shadia: Thanks for having me, Laetitia.

Laetitia: Welcome to another Quick Pulse from Zoe on the Neurodivergent Pulse podcast. So Zoe, today we're talking about relationships. What makes you know that someone is a really good friend to you?

Zoe: When they actually understand my feelings and they don't laugh at me when I get stuff wrong.

Laetitia: Mm. Thank you. That's a green flag friend.

Zoe: Yeah.

Laetitia: And what helps you trust someone new, a new friend, a new person?

Zoe: When they look very nice, they smile at me, and they tell me their name, and they look very joyful.

Laetitia: Okay. That helps you feel you can trust them?

Zoe: Yeah.

Laetitia: Thank you for sharing. And what do you wish adults remembered about being themselves a neurodivergent kiddo?

Zoe: I think they should remember that they are all different and they don't know exactly what to do sometimes.

Laetitia: Mm.

Zoe: And they can't do exactly what you know how to do.

Laetitia: Thank you. Thank you for sharing, Zoe.

Zoe: Bye.

Laetitia: Bye, everyone. That's a wrap for Neurodivergent Pulse. If this helped, follow the show and leave us a quick review on your favourite platform.

Laetitia: You can even share this episode with someone who needs it. You can learn more about our platform at understandingzoe.com. Thanks for listening.