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Kay Kerr: Love And Autism

Join Peta in a heartfelt conversation with Kay Kerr, an autistic writer and journalist, as they discuss Kay's latest book, "Love and Autism." The book explores the lives of five diverse autistic individuals, showing the many forms that love can take, whether through relationships, friendship and self-love.

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Episode Transcript:

Kay Kerr.mp3

Peta [00:00:03] Hello and welcome to The I Can't Stand Podcast. The podcast answering your questions on what life is like when you have a disability. My name is Peta. I have cerebral palsy and I'm the host. This week I have cake. Now you may know that name because of her many amazing books, but in particular her recent one we're going to talk about today, Love and autism. It was an absolutely fabulous book and a fascinating look on autism and love. So without any further ado, let's hand over to Kay.

Kay [00:00:50] Thank you so much for having me. My name is Kay. I'm an autistic writer and journalist, and I've just written a book All about Love and Autism with the very autistic title, Love and Autism. So it is a narrative non-fiction, interweaving the lives of five different autistic people and exploring all the different ways they love. So when I say love, I mean romantic love, friendship, families, love of special interests and pets, and most importantly, I think, self-love as well.

Peta [00:01:24] I really thoroughly enjoyed the book because there's not that many illustrations of all the different loves that people can have throughout life. So congratulations for bringing this to the market. I think it's very needed. Why do you think that the group of people shared their story and why did you feel it was important?

Kay [00:01:46] Yes. I feel so lucky that they did share their stories. And I think it's for a couple of reasons, I think. I remember when I got my autism diagnosis, which I think was about nine years ago now, and just really seeking out stories from other autistic people about their lives. I wanted to question them about everything. I wanted to know, you know, what was school like for you? What was your childhood like? What was your relationship with your siblings? What was your teen hood adolescence like for you? What happened when you got out of school and you sort of left that environment and just wanting to connect and know everything about different autistic people's lives? And I think a lot of autistic people feel that whether they were diagnosed as children or as adults, having that connection and those shared experiences with other people is really affirming. Particularly when you grow up with this feeling of sort of getting it wrong and not doing it right, whether that is, you know, relationships and love or just the many other ways in which autistic people are told that throughout their lives. So I think very much it was wanting connection and but also wanting to share their stories so that, you know, the next generation of neurodivergent autistic people growing up would have those stories to relate to and perhaps not feel so alone in their challenges. And also, I guess, showing their triumphs like the ways in which they celebrate themselves and support themselves, accommodate themselves. Just sharing all of that, I think, with very much the intent that it would be helpful to other autistic people, but just helpful for anyone who reads it, I think.

Peta [00:03:22] I think it's always important to talk about the people with their names and tick because these are real people and they were so clearly generous with their time and their stories are opening up to UK. So we have Michael, Jess, Noor, Chloe and Tim. Why did you think that was the right fit for the book and how did you find them?

Kay [00:03:43] Yeah. So I really wanted to show a diverse range of artistic experiences, partially because the broader understanding of autism still is around that young white male stereotype or particular presentation, which the diagnostic criteria is built on. So I wanted to expand on people's understandings of what autism can look like and feel like for people. The main challenge for me was finding people that were really keen to connect and to do this and feeling like we had that sort of connection to be able to talk because some of the things that we did get into. You know, the hard moments of life, the really challenging parts. It was as much as they wanted to share as well. Like, there was plenty that that everyone, you know, chose to leave out. And they had control over the process all the way through reading drafts and saying, actually, I don't like the way that's worded or I might want to leave that part out. And there was even sort of people of the north in particular where sort of halfway through the interview process, we delved into this whole other aspect of her life that she hadn't originally shared. But then, you know, as we became close friends and she sort of saw the value in adding that to the story as well. So it was a really organic process, and I hope that they felt empowered and in control the whole time. And I think that was the challenge of it. But I think and that's what made me sort of, I guess, terrified throughout the process because I really wanted them to feel like if at any stage, you know, you hit burnout and you want to pull out or you change your mind and you don't want to do it anymore, that's totally fine. But it also meant that I didn't know that the project was going to come together until, you know, right at the last minute when it was all there and when they'd read the draft, when they were happy with it. That also led me to, I guess, putting in some more of my own anecdotes in life stories and essays and pieces, which I hadn't originally planned to do, but I felt very much like I'm asking for this vulnerability from these interviewees, and they've absolutely come to the table and blown me away with everything that they've shared and the generosity. I didn't want to make it like it was about me. I didn't want to sort of draw attention to my story, but I also felt like they're bringing this vulnerability to the table. I need to do that as well.

Peta [00:06:07] And I also think it gives a different level of trust, particularly when you yourself have autism as well. I think that can't be underestimated and it really shows in the quality of the work, I think.

Kay [00:06:19] Well, thank you so much. And I think that's to have the conversations ongoing as well. They would share an experience from school and I'd be like, Oh, that's like this time for me. And so that was I wanted to bring that sort of spirit into the into the text as well, which is how the interviews felt as they were happening. It is so affirming to have those conversations where you have that shorthand, even if the experiences are wildly different. And, you know, my life is very different from that people that I talked to in lots of ways. But at the same time, there's just that shared understanding that if they're talking about their sensory differences, for example, the sensory challenges, mine might not be the same. But I understand what it means to have sensory challenges in a different way. So it's just yeah, and I think I think that so much about autistic people and also more broadly about disabled people, that being in community with one another is just so, so important. And that's really what this book sort of drove home for me just on a personal level.

Peta [00:07:22] And how did you find them all? Like that would have been so stressful. Oh, my goodness.

Kay [00:07:28] Was it was stressful. But yeah, so I had a variety of ways. Like, Jess is a friend, like my first autistic friend that I made once I got my diagnosis just through the Australian way writing community. And we just connected over social media years before this project I sent, I think I sent her a message with a million caveats of You don't have to do this if you don't want to and don't feel pressured. And no, I found we both wrote for SBS Voices and I particularly wanted to include someone who was an autistic parent because that's not a voice that we hear a lot of. We hear of autism parents, autism mums, and they are often parents of autistic children as opposed to autistic parents. So that was particularly important to me. Michael I reached out through the producers of Love on the Spectrum to speak to him and then Tim and Chloe. I reached out through an autism support agency, just like a more broad call that anyone might be interested in having a chat. And there was a few different people that came through that, and they were the ones that ended up being a really good fit. So I did like an initial interview with everyone, like a more broad overview kind of a thing where we said, you know, what was your childhood? What are you doing now? Like, let's have a chat through. And from that I kind of was able to piece together a sort of small, stable structure, but it was then in the actual going back and interviewing them again and again and getting the details that the story started to interconnect in a way. So it gave me a very. Fluid idea of, okay, I'm going to leave this point with this person. And that kind of relates to where this person's story picks up next. That all happened as I was going, which was terrifying, but I think hopefully meant that the the end result was better for it.

Peta [00:09:27] It flowed really beautifully. And as you said, many of the stories did interconnect. Were there any themes that sort of disconnect that really surprised you between each person?

Kay [00:09:40] I don't know that I was surprised by this, but I definitely it really drove home for me how challenging the schooling years are for neurodivergent people and being a parent to a school aged kid. That was a real just a reminder for me that those kinds of structures are not built with neurodivergent or autistic people in mind. And all of the different ways that that that time period can be challenging. Each person sort of had their own challenges and their own experiences, but it very much felt like a path or a journey towards finding themselves or living in a way and authentic, authentic way that supported their needs and highlighted their strengths and worked for them, I guess, as opposed to sort of trying to fit yourself into the neurotypical mould of what a life should look like or how a life should be. I think there's all these outside markers that people have in mind sometimes, like, you know, living a life, living independently or getting married or having a particular job that are seen as these life markers. And I just think that's not. The goal for everyone. That's not how everyone's life is going to look. And I think if a person is living a life that works for them and brings them joy and they're able to to do what they like to do and be themselves, I think that to me is a marker of a a positive life.

Peta [00:11:16] Do you feel like through this process you've learnt more about autism and did you reflect on your own autism throughout the process?

Kay [00:11:25] I learnt so much. I learnt huge amounts about myself, huge amounts more broadly, even just in the research, because there are some parts where I delve a little bit more into, you know, research and history around autism diagnosis. Overall, it's just that like productivity sort of curse that we're all under a little bit, but just that ablest internalised ableism I guess that I have around productivity and needing to contribute and not prioritising rest. And I guess because I was in a little bit of burnout working on the book as well, trying to get it done and talking to these people about, you know, how they make their lives work for them. It just it. Drove home for me that, yeah, my life can look different to other people's lives and taking rest is really important for me and my brain. I purposefully post publication built in no projects or all the things I'm working on now are smaller and no looming deadlines because I needed to practice what I was preaching and writing about the importance of rest in the book as well.

Peta [00:12:44] I was personally particularly captivated by Tim story. All too often people who are pre-verbal or nonverbal or non-speaking. Their stories don't get told. For those listening who haven't read the book yet. Could you tell us a little bit about Tim's story?

Kay [00:13:04] Yes, Tim Chan is incredible. So if you haven't already heard of him or followed his work, you can find it. He's got a website, Tim Chan, to come to you. And also he's done an incredible TEDTalk, which I recommend to everyone to watch. Tim is non-speaking. He uses augmentative and alternative communication, which is also known as AC. I spoke to him and also to his mom, Sarah. I initially set out not to interview parents because all of my autistic people were adults and often times autistic people are infantilized. And when? Why are they in the disability community? That's an issue as well. So that wasn't my intention. But Sarah, his mom, assists with his communication and also just the bond that they had and the story that they shared about, you know, Tim's challenges in school, his communication device not being allowed for a certain number of years. So he was completely cut off communication wise in school and how that impacted his mental health. I really it was important to me to include somebody who was non-speaking and it was the way team. Communicates his use of language. It's hard to explain. It's just it's so in-depth and beautiful and just a completely different perspective in the way he shares and connects with people and advocates, particularly for non-speaking autistic people, which is incredible, incredible work that he does. So I felt hugely honoured to include him and his story. We had. Yeah, long chats and then follow up emails so that if there was any additional information, he could add it on email. I felt that was a really important part of the book and like you said, not something that we see enough of definitely in representation.

Peta [00:15:10] With five different stories that you were weaving together and really illustrating what love can be for all different types of people. What do you hope that the reader takes away from, you know, their time with you in the book?

Kay [00:15:27] Nuance and depth were kind of my aims with the project because I feel like we hear this phrase often, which is if you've met one autistic person, you've met one autistic person, which is true and great. But I also feel like it can be used to dismiss autistic people that are speaking about their experiences. So I think by having Michael, Chloe or Jess and Tim all included and woven together in that way, it shows the shared experiences or the connections, but the differences and just adds, I hope, more context, experience and yeah, like I said, nuance and depth to people's understandings of what being autistic can be, because I think so much of still what people understand on a broader level is these outward behavioural. Manifestations that are really only such a small part of the autistic experience. And that's only, you know, what's observed from other people. It's not really tapping into the inner lived experience of what what those behaviours even represent or, you know, people who's whose autism manifests in a way that is more internal. And then so there's not a lot that's seen from the outside. And hopefully just a broader understanding because I think people would say I wouldn't discriminate against an autistic person and then in the same breath, breath would, you know, say people who don't make eye contact a dog or, you know, I don't know why people prefer to work from home. And there's all these stereotypes and judgements made against autistic experiences or presentations, but people would not necessarily connect them to being able to act against autistic people. So I think the more understanding that people have, the more that I guess they can see different ways of being as valid and just different as opposed to this is the one way we should all be.

Peta [00:17:31] And I have no doubt that you've probably been flooded with messages from people who, you know, saw themselves in one of the people's stories who have autism themselves. What advice do you have for anybody, whether they have autism or not, listening to this podcast that might be yearning for connection or haven't got love in their lives in whatever form it might be? What sort of insights do you think they can gain from your book?

Kay [00:18:01] I hope the takeaway is, you know, that finding a way to live your life that supports and celebrates your needs and your particular way of being and not trying to. I guess, be a different version of yourself. Yeah. One of the biggest messages that I've gotten again and again on email is actually parents of autistic children who, through reading the book, have realised, Oh, I understand autism on a level now where I think I'm actually autistic. And I think that's often the case a lot of the time that there's undiagnosed narrative agents because you know there is that genetic link. So I think, yeah, if I can open someone's eyes or share and make them feel accepted and connected, whether that's with their own kids or with the other autistic people in their life, I think that would be huge. That would be wonderful.

Peta [00:19:05] Having a better understanding of yourself and other people is so powerful. And I'm all about creating better understanding of what it's like to live with a disability. And this book is a really good example of how powerful that can be, clearly. What do you wish people better understood about autism in general? If we're just talking about the greater society, the people that are off this morning getting their morning coffee? What do you wish they better understood about autism? K.

Kay [00:19:37] Yeah. So I there's a couple of things I wish, and I think this is in the book, but I wish that people understood how much work and how much effort autistic people put in to communicating and living in a way that works for their non autistic people in their lives and in their communities. So much work, so much stress, so much effort, and it's exhausting. That's part of the, you know, the tiredness that we were talking about. The fatigue is trying to fit in in a way that doesn't work for our brains. So if people understood all of that effort that autistic people put in, then perhaps it might encourage them to put in a little bit more effort in communicating in ways that work for the autistic people in their lives. Because communication is a two way street. It's not. You need to do it my way, but and this is the right way to do it. There's so many examples of that that I see play out in everyday life, whether it's like, you know, the older relative who wants the younger child to to hug them and the younger child he doesn't want. That's not how they show love to how they show love might be, you know, showing them their collection of their favourite toys or talking to them about their favourite book that they're reading. But maybe that that adult only sees hugs or physical affection as, as you know, how that person's showing love. And I just think we need to understand other people's communications around connection and relationships and love because yeah, other people's ways of communicating love have not always felt to me like love either. So I hope that's the takeaway. And maybe it's like just a little piece for people to have a think about.

Peta [00:21:31] And from like a practical point of view, for us to better understand, is that just simply asking what sort of communication styles do you like? How can I best support you? What sort of access needs do you have there? Any other questions that we should be asking?

Kay [00:21:49] I think it's more like work to be done before the communication even begins, like looking at in internal sort of biases or understandings. So that when you turn up to the table or turn up to the conversation or that or the engagement of any kind, that you're open to various forms of communication, you know, whether that's somebody being very excited about a particular topic they're passionate about and just info dumping a lot about that and taking that in. I've seen people complain about that in the past and to me that is one of the most rewarding communication styles when I get to learn all of this new information about something that someone else is passionate about and they're passionate about, that helps me to learn about it, because if they're excited about it, it gets me excited about it as opposed to viewing it through the lens of, Oh, they're monopolising the conversation, or they're talking about something that I'm not interested in or you know. So I think it's more of a framing and an understanding that happens before the communication even begins. And just understanding that there are different ways of communicating. You know, sometimes autistic people might not be able to help interrupting. Maybe that's something they're working on and they're very aware of it. But there's interrupting and that, you know, that doesn't necessarily mean that person is rude or doesn't care about what you're saying or doesn't see the value in your side of the conversation. It's just that's another communication style. That same for for non-speaking autistic people. I think there's so much more opportunity for non-speaking autistic people to be. Given platforms to be included, to be involved, to be given a chance to share their experiences. And I think just being open and being curious and like you said, asking what what accommodation or access needs, they have to be involved. I think it really is as easy as that.

Peta [00:23:51] Thank you for listening to this week's episode. I really enjoyed talking to Kay and I hope you did too. Can I encourage you to leave a writing interview on whatever platform you're listening on or hit follow? It helps more people find the podcast. So until next week. Have a good one, guys. Bye. I'd like to pay my respect to all Aboriginal and Torres Strait Islander cultures, but especially to the pioneering people where this podcast was recorded.


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