Podcast Transcript

KA: Welcome to the Autistic Self-Advocast, brought to you by the Autistic Self-Advocacy Network of Australia and New Zealand.

Hello. My name is Katharine Annear, your host for the Autistic Self-Advocast. Today we celebrate Autistic Pride Day, and welcome Autistic self-advocate, Shadia Hancock.

Hello, Shadia Hancock, who is nineteen years of age, who is a young autistic self-advocate and runs their own self-advocacy business, Autism Actually and has been doing self-advocacy since high school. A rising star of the autism self-advocacy movement and also someone we can rely on in the future because some of us are getting a bit older! So, welcome, Shadia, and if just want to tell us a little bit about how you got into self-advocacy, that would be great.

SH: Yeah, sure. Thanks for having me on the show, Katharine. I guess I first got into self-advocacy when I started seeing some other autistic people speak. When I was about the age of thirteen my mum took me to see this autistic adult speak at a school workshop and I was able to meet up with him after and talk about some of the work that he was doing. And I guess this kind of inspired me to look at doing something similar for myself, particularly because at the time I was experiencing things like bullying and really struggling with my autistic identity. I then had the fortunate opportunity to meet some amazing autistic self-advocates, which was organised through my mum and a friend of hers, and they were all from different backgrounds, they had varying support needs, and they just helped me in forming a positive autistic identity and also feeling proud of being different, which is something that I hadn’t really been exposed to yet.

So, after that, I was really passionate in helping my teachers understand more about the autistic experience, so then I gave a professional development for my teachers after school one day, and then my entrepreneurship teacher at the time suggested to me to make this into a business, ‘cause he felt it would be helpful for teachers and parents and a variety of people in the community to hear from the autistic perspectives. So, that started when I was about fifteen years old, and I’ve continued ever since. It’s been an amazing journey so far. I can’t wait to see what the future brings.

KA: It seems like a fantastic journey and I really wish that I, at thirteen, had had the opportunity to meet older autistic people, to meet people like myself, but of course when I was thirteen it was during the 1980s, and they didn’t really think that a person like me could be on the autism spectrum so I didn’t have a diagnosis back then but I really think that if I did, I really would have benefitted from learning from older autistic advocates. So, I guess, another question would be to you, in what ways have you directly benefitted from mentoring or, say, older autistic advocates showing you the way?

SH: Well I know that even before I was aware of being autistic, so let’s say, even toddler age, my mother read a lot of perspectives from autistic adults and autobiographies and blog posts and things. So, even before I was able to start articulating myself in that way, it was already influencing my upbringing, and, you know, what pathways we went down, in terms of support and things like that. And, as I said, I found out about my autism at the age of eight, so I actually looked at the word “autism” on a noticeboard or something in the computer club I was a part of, because my primary school had a sort of a, what would you call it, a support group for autistic students so we had our program that we’d go through. And then I kind of connected the dots that it must be something to do with myself and my friends. So, I asked my mum whether they were autistic and then whether I was autistic, and she replied, “yes”. Yeah, but particularly when I was thirteen, I started wanting to learn more about what the diagnosis meant, and how this made me different to other people, particularly when I was going through some negative times, and being able to just hear about the experiences of autistic adults who had already gone through something similar to me, or even ones like yourself, Katharine, who had maybe been in a different era, and how they kind of coped with those struggles and also learned to thrive as adults. And I think it just gave me that hope that I could be successful and to advocate for a change in the world. And I think before I was able to articulate and reflect like I am now, it was great to be able to put words to my experiences and just go, “oh, they went through that too. Okay, so I’m not alone in this. It’s not something that’s wrong with me or abnormal, it’s part of the autistic experience”. So, I think that that’s been really powerful in the way not only that I view myself but other people with differences as well.

KA: So, at what age do you think young people should start learning about their diagnosis?

SH: I personally think as soon as possible, I mean, I know that, well I was diagnosed quite early, so I was diagnosed at the age of three, which, it was pretty amazing, ‘cause my profile’s a bit difficult to kind of pick up but I had some sort of gross motor issues that  kind of suggested that my development was different. But I think, having a parent that was kind of honest with me from the get-go was really helpful, and I think being able to tie into supports that made me feel more positive about myself was really vital. I know that with some of my friends who had been late diagnosed, so maybe as older children or even teenagers, they’ve had a lot of issues with reconciling their autistic identity and kind of getting through that mask that they’ve built around being autistic. And I think it’s really important that even children can understand that being different is not wrong, it’s not, you know, we’re not disordered, we’re not, you know, abnormal, it’s just, difference is something to celebrate and something we should all embrace as a community, so I think the sooner the better, really.

KA: So, I was diagnosed at the age of thirty. And that was a relief for me. And I’d kind of suspected for at least five years before that, that I was autistic. And I experienced a whole range of emotions, and I expect everybody will when they find out about their diagnosis, whether they’re five or fifty-five: it’s a whole lot to process. But I really think it helps to have a community around you that’s going to help you process that emotion, as well as find out more about yourself. So, what we’re aiming to do with this podcast, the Autistic Self-Advocast, and some new resources, is to really give people an idea of what’s it like to be in the autistic community but also an idea of how to self-advocate and what you can do to speak up for yourself and other people. So, I’m wondering what you think are, like, the key things that people should know about self-advocacy?

SH: Sure. I think anyone has the ability to self-advocate, and it can come in a variety of forms really. It doesn’t always have to be speaking in front of a large audience of people, it can be something as simple as sharing an insight on, you know, in a piece of writing, or even telling your friends more about your experiences, educating the people around you, learning how to access support. I think all those sorts of things can be really powerful forms of self-advocacy. And even though you might not think that that’s a lot, who knows how that will influence the other person and how they treat autistic and disabled people in the future. So, I think the trick with self-advocacy is, if you’re going through something, I think the main thing is try and find a community where you feel supported and I think having access to those communities is empowering, so you’re not having to, you know, soldier through things alone. I think that, yeah, learning how to self-advocate’s a really important skill and it is something that I’ve found that I’ve had to continue to do throughout my life, past school. So, I think it’s a really vital skill to have, and the more resources out there to help each other, the better. And I know that, as we were talking about, autistic adults before, they’ve helped me learn to self-advocate and the kinds of sort of actions I can take to stand up for myself and learn how to communicate my needs to other people. I think it’s really important.

KA: Yeah, I think a lot of it is about knowing what your needs are, knowing what your rights are, asking people to meet your needs and to uphold your rights, but also, like you say, being supported by a community of people. Because you don’t want to feel alone or lonely in doing that. And I think we’re lucky, fortunate, in this day and age, to have the internet to connect via and to form groups of self-advocates who meet across Australia and across the world and support each other to sort of meet our mutual goals but also support each other with individual issues, like how do I go about talking to my doctor about this, or how do I go about getting some support to get onto the NDIS in Australia, or how do I go about, you know, asking or telling my parents something about autism that they may not know or talking through an issue that they may not understand. So, that community of support is what we’re hoping to build more of…

SH: Mmmm.

KA: Through this podcast, and through our self-advocacy project. So, do you have any, I guess, final top tips for people wanting to speak up for themselves?

SH: I think the main thing is that you don’t have to do it alone, you know, we’ve got a whole community out there and lots of resources. And, as you say, the beauty of the internet has made it a lot more accessible, so if you’re not comfortable or don’t have to, say, try and explain something about autism to someone, you could find a blog post, sort of articulating your thoughts; I’ve done that before. I’ve got, sort of, a repository of resources I refer people onto, and I think it’s important to respect that, that you don’t necessarily have to take it upon yourself to educate people yourself and that there’s a network you can use for resources and guidance. And I think also, I think it’s also important to respect your own journey, and, you know, if it’s getting too much for you, or you’re not quite comfortable sharing a particular experience you have, it’s okay to admit that, and it’s okay to refer people onto other resources because I think forcing yourself to kind of exhaust yourself for the sake of advocacy is not healthy for you, and, you know, could lead to things like burnout. But, I think like what we were talking about before, anyone has the ability to self-advocate and the more voices we have in the community, the better. Because of course autism is a massive spectrum so I believe every perspective is beneficial and it can help all of us learn more, and I think definitely linking in with autistic adults or older autistic people who might have slightly different experiences, they might have gone through a similar situation and have some advice for you. So, yeah, definitely investigate what resources are out there and how others can support you. And have a good support network, not just autistic people, but other non-autistic people that you might trust too, can be really helpful.

KA: Yep, I think that knowing who our allies are, and who we can turn to in our own circle of support is really important, and hopefully people can by the Autistic Self-Advocacy Network in Australia and New Zealand, and sort of see the resources we’re producing. In future we will be looking for a co-design team to help us with the resources, so look out for an announcement around a co-design team, which means that basically autistic people will be working with our autistic people, because we’re all autistic too, to design the self-advocacy resources and get them out into the community. Well, Shadia, I really want to thank you for your time today, and your insight into self-advocacy and your own journey, and thank you for being our number one, inaugural guest on our podcast, the Autistic Self-Advocast. Thank you so much.

SH: Thank you very much for having me, Katharine, it’s been a pleasure.