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Transcript of Amplified: Autistics in Conversation with Reframing Autism, Episode 2: Yenn Purkis
[Music intro: ‘Winter is here’ by Elliot Middleton for Premiumbeat, a delicate piano melody which creates a hopeful mood]
Hello and welcome to our second episode of Amplified: Autistics in Conversation with Reframing Autism.
I’m Ginny Grant, an Autistic advocate, writer, and Reframing Autism’s Communications Manager.
I am so pleased to be chatting today with the wonderful Yenn Purkis. Yenn is an Autistic and non-binary advocate, presenter, and author and co-author of 10 books. Yenn has been a trailblazer in Autistic self-advocacy, with their work in this area beginning in 2005. They are truly prolific, producing memes, blogs, videos, and undertaking many speaking engagements, including a TEDx Canberra talk in 2013. Yenn has won several prestigious community leadership awards over the years, including the winner of an Achievement in Inclusion award at the 2019 ACT Chief Minister’s Inclusion Awards and also ACT Volunteer of the Year in 2016.
On a personal note, I’ve been following Yenn’s work since 2015 when Autism came on my radar for the first time as a parent. I’ve seen Yenn present – in fact, at one of Reframing Autism’s early workshops at Plumtree – and like everything that Yenn does, their presentations are just full of warmth and colour and tremendous insight into Autistic experience. As a parent, I can recommend their series of books, ‘The Parents’ Practical Guide to Resilience for Children on the Autism Spectrum’, co-authored with Emma Goodall, and also their ‘Awesome Autistic Go-to Guide’, co-authored with Tanya Masterman.
For those of you who are new to this podcast series, Reframing Autism is an Australian-based, not-for-profit organisation which is run by and for Autistic people and their families and allies. It is dedicated to creating a world in which the Autistic community is supported to achieve acceptance, inclusion and active citizenship.
Ginny: Welcome, Yenn! Let’s start with your Autism journey. Could you tell us a little bit about when and how you learned you are Autistic?
Yenn: I … I’m one of the first Autistic people diagnosed in Australia in … when the new Diagnostic and Statistical Manual came out with Asperger’s in it, so I was diagnosed in 1994. Bit of a long story – I do have a book about it called ‘Finding a Different Kind of Normal’, which is my autobiography – but I was actually a prisoner when I was diagnosed. Very long story, as I say, if you’re interested, grab the book. And my parents, my Mum worked with somebody who had a son who had just been diagnosed with this Asperger’s thing, and they got talking, and my Mum said, ‘Gee, that sounds like my child, Yenn.’ And so, they arranged … my parents arranged for a psychologist to come and do the assessment. I’ve actually been in touch with that psychologist, Dr Vicki Bitsika, and I’ve been in touch with her since, and she said it was quite challenging going into a prison to do an assessment, but that’s what happened. I got my assessment done and came out. I got the diagnosis of what was called Asperger’s, and I did not accept it for a number of reasons. I had a number of reasons that I did not want this to be me. I did not immediately find my tribe. I did not find it liberating or anything like that. I thought it was justification for the bullies at school and what they said to me – and it was … actually must mean they’re right, because they called me a nerd and all these things, and my understanding of Autism was very limited, and I thought it was a diagnosis of nerd and I didn’t really want it. Deep down, I knew I was Autistic, the whole way. So, it took me seven years to come to terms and to accept my diagnosis, but really the whole time I knew it was correct, but it was just very raw and very personal for me, and I didn’t want it to be correct, so it was quite a complex sort of thing. But I did accept that diagnosis when I was about … ooh, gosh, I don’t know 25–26 and that was the beginning of my journey, I guess, of my life now. And I’ve learned a lot since 1994, and I’ve learned a lot about my Autistic identity and actually finding that, that strength and that pride in who I am, but it was quite a journey. And so, I do sometimes in my advocacy work come across people that aren’t very comfortable with their diagnosis and don’t really want it to be the case and I have a lot of empathy for those people ’cause that was me too. You wouldn’t think it now, but yeah …
Ginny: That’s just … it’s so interesting, and, of course, it is so different now as someone who was diagnosed only last year. It’s a whole other thing now. So that’s just fascinating. Can you just say again the title of your book, Yenn, in case anyone missed it?
Yenn: It’s called ‘Finding a Different Kind of Normal’.
Ginny: Thanks. So how did your interest in Autistic self- and systemic advocacy develop?
Yenn: That was also a bit of a journey, actually. So, I wrote my autobiography in 2005, and so that sort of put me into that space of advocacy and I became an Autism advocate almost by default, but it wasn’t really my passion. So I did a few conferences, a few things like that, but not really anything very passionate and sort of quite like my interest in advocacy now. My interest in advocacy, that I’ve had for the past, sort of almost – it’s almost 10 years – has been related to actually meeting an autistic young person who was very disabled – not by his Autism but by everyone’s attitudes around his Autism – and this young man had finished school in Year Nine, and never engaged with education again. He’d spent six years of his life since he finished school, sitting in his room playing computer games and he was not happy with his life. And when I met him, I said, I was Autistic and at that point had written one book and worked for the public service, and he goes, ‘You’re lying. That’s not possible,’ and just that conversation made me realise I needed to do something about empowering Autistic people – particularly Autistic young people and kids – to be able to embrace their life, as Autistic people, and to be proud of who they were, rather than being told they couldn’t do anything, and that, you know, they might as well give up now. And that really spurred me into action, and that was in 2012, and since then, my advocacy work has just taken off. Actually, just before I logged into this conversation, I was updating my master spreadsheet, my master CV which has everything I’ve done in the Autism and mental health advocacy areas in the past 20 years, and that CV is 28 pages. I’ve really done a lot of things since then and it is my passion, and an Autistic person’s passions will take them a long way. I was talking to someone – I can’t remember in what context – but I was talking to someone the other day, and they said, ‘Oh yes, once an Autistic person finds their passion, they change the world.’ And that is so true – has been true for me anyway.
Ginny: Absolutely. And thank goodness you took those first steps in advocacy, because you have just made such an impact to so many people’s lives and, I think, different areas of your advocacy have resonated with different people and just have brought about so much positivity. And can you tell us why you decided to write that first book, and how your interest in writing has developed over the years?
Yenn: I always loved writing. I’ve always … When I was a kid, I just read everything there was, I was always reading. When I was about 30, just 29–30, I was at art school, doing a … a master’s degree in Visual Arts, and I did a lot of artwork that was based in text and writing. Idid little paintings with words and stuff, and people said to me, ‘Gee, you write beautifully. You should write your life story. You know, you’ve got a really interesting life story – you should write your life story.’ And I thought, oh, I don’t want to do that and I kept saying no, like, no, no, no. And then, when I was doing a course for Autistic people so that we could go and do public speaking, I met a mentor, which was the late and most wonderful Polly Samuel, and Polly said to me, ‘You should write your life story,’ and I said, ‘No, I’m not writing my life story’, and Polly said, ‘I give talks to parents and, usually, there’s a couple up the back of the room, and they leave before the end, and they leave before the questions, and they leave before the cup of tea. They leave because they’re ashamed because their child is caught up in the criminal justice system and, if you wrote your story, it would be for those parents.’ And I remember thinking, hmm, that’s my parents and that was when I decided, Okay, I’ll write the book, and I wrote the book. It took me four weeks to draft the book, two weeks to edit it, and three weeks for the publisher that I sent it to, to say, ‘We would love to publish your book.’ So that was how that came about and I really was quite reluctant to write a book. I, I remember thinking, years before I did any serious writing, the last thing I want is to be the author of self-help books, and now I have eight published. So, yes, that … that happened, but yes.
Ginny: So, you’re about to release a new book with Dr Wenn Lawson. Can you tell us a little bit about that?
Yenn: That book came about … So I was writing a book with Tanya Masterman called ‘The Awesome Autistic Go-to Guide’, which is a book for kids, for Autistic kids and teens to embrace their pride in who they are and understand that, you know, being Autistic is, is another way of being, and it’s fine and it’s a good thing. And to be, you know, to build that positive self-knowledge. And we got to writing, and the publisher said, ‘Oh, are you going to put in anything about puberty and gender identity?’ And we said yes, so we put in a little bit about puberty and gender identity. And then I sort of thought, maybe there’s another book here. So, I messaged the publisher and I said, ‘Should we do a book about gender diversity and Autistic kids?’ and they said, ‘Oh, it’d be good to have an adult book about that.’ So, obviously, that wasn’t one for Tanya to write with me, ’cause that’s not her area of expertise, and I thought, well, I’ll ask Wenn Lawson, because he’s very knowledgeable, Autistic trans role model and he’s written many more books than I have, so let’s do that. So I contacted Wenn and he was very keen, so we wrote this thing together.
It’s basically a practical handbook for trans and Autistic adults. I’m actually putting in a submission to do a book on trans and Autistic, Autistic kids and teens, so that, that is something that’s happening, but the one for adults is really … I mean one of the things I’ve found as a non-binary Autistic adult, is that there’s not a lot of information out there for people who are trans and Autistic. There really isn’t and there’s a few groups; there’s some really good groups. There’s one in Victoria called Spectrum Intersections – it’s very, very good – but there isn’t much out there, so I guess our book is, is … to put something in that space, so people can have access to useful information and all they need to do is just buy the book. So, it’s coming out in March next year, and I’m really looking forward to it. I think it should do well. The publisher’s very keen on gender diversity books at the moment, so I’m all for that. That’s a good thing. As to what’s in the book, as soon as I write things they fall out of my brain, so I have to actually read the book again to remember what I’ve written.
Ginny: So, look, in terms of your many, many achievements, can you name one or a couple that you’re most proud of?
Yenn: In the books, is probably something I’m extremely proud of. I never thought when the first one came out … I didn’t think I’d have any more. I thought I’d just have one book and that was fine – I had no issue with that. Writing one book is a laudable thing, but I didn’t … yeah, I didn’t realise I’d have quite so much information and knowledge to share with the world, to put into eight books, and now ten books. Yeah, so that’s a really lovely thing.
I guess the other thing is … I guess, my profile and not in terms of ‘I’m famous’. Of course, I am a bit famous in the Autism world. But in terms of people come to me for advice; people come and talk to me when they’ve got a question, when they’re concerned about something. I had a friend the other day, send me her website, that … and I was the first person she’d sent her website to, and she wanted to tell me about her website. That,I love that, I love that, I love how people, if they’ve got a question about Autism or gender diversity or mental health, they’ll come and ask me, and that people trust me that much with their questions. The other thing as well, is people trust me with private information, and I do, I have thousands of pieces of confidential knowledge in my brain, which will never go any further than my brain, which is, you know, a lovely thing.
Ginny: What do you hope to accomplish in the future, Yenn?
Yenn: It’s funny, I’m a very ambitious person, very ambitious – I always have been. It’s what’s made it possible for me to get out of that very difficult life I was in to the one I’m in now which is great – I love my life now. But I think with ambition, you get to a point, and you don’t need ambition anymore. I don’t have a lot of aspirations – specific aspirations – my aspirations are to keep going and doing what I’m doing and helping other people and just seeing where things take me, and it’s lovely. I get a lot of requests to do things. I used to have to sort of seek out opportunities whereas now the opportunities sort of turn up, and I, I can decide what I do with that, which is lovely. I want the world to be better. The world is better. The world has changed in the Autism community. The world has definitely changed, and I think, in a lot of ways, has improved, but you can never be complacent with this stuff. As an advocate and to a lesser extent as an activist, I know that you can’t just let it go and think oh well, it’s doing well now so we’ll just … it’ll just keep going on that trajectory – it doesn’t. Things go backwards and forwards; things get worse, things get better. And we have to be aware of that; we have to not be complacent and you have to make sure that the work we’re doing is supporting … moves into a positive direction. We can’t assume that just because things are improving that they will keep improving or that things are improving. You know, there’s still dreadful things going on. There’s that … that fellow in America who’s in prison – the Autistic guy, Matt Rushin. And that’s horrific … you know, he shouldn’t be in prison, and he is, and he is because, basically, he’s Autistic and it’s not understood so, you know, things might be doing okay in one place, but not another. And, yeah, we really can’t be complacent. We have to keep fighting; we have to keep putting forward the positive view.
I’m in the media today, I’m in the media in Perth. And somebody … I posted the article, and somebody said, you know, this is great, you know that Autistic voices are being, are being listened to, and it is, but we can’t just let that go. We have to keep, keep moving forward and keep making sure that things don’t get worse.
Ginny: Mmm. Absolutely. You’ve been so open about your journey with mental illness over the years, and I really appreciate that, that advocacy. What … what are some of the important aspects of maintaining your own mental health and wellbeing, and what advice do you have for other Autistics who might be experiencing mental illness?
Yenn: I think, seeking help is really important, be that from professionals or friends or family, family of choice. Finding somebody that you can talk to about mental health issues is really important. Trying to manage it alone is not good and doesn’t work. I think finding strategies that work for you, like practical strategies … for me distraction is the one, so if I can go to work when I’m unwell, I will go to work because that’s a great distraction – you’re focusing on what you’re doing; you’re not focusing on how miserable you feel. Of course, you know, you do have to know where to draw the line and take a day off because sometimes you do need to, you know, even the distraction element’s not going to work. I think recognising that mental health issues are nothing to be ashamed of, and that it’s part of life, and it’s like a health … Any health condition, you need to access support for it and access treatment and things like that. Know what works for you. For me, I take a lot of medication. Not everyone takes a lot of medication and that’s okay. And, yeah, I think, just, just do what works for you, and it can take a long time to work out what works for you, but it is a journey, and it’s definitely a journey to take.
Ginny: Yes, absolutely. Thank you so much, Yenn, for talking with me today, and thank you to our audience for listening to the second episode of Amplified.
In our next episode we’ll talk with Kathy Isaacs, who is an Autistic advocate and activist. Kathy is the chair of the Reframing Autism board, and also a director of The Autistic Realm Australia, also known as TARA, and former chair of the Autistic Self Advocacy Network of Australia and New Zealand. Please listen in next time.
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If you’re not already part of our social media communities, please do join us online. You can find us on Facebook, Instagram, LinkedIn, Twitter, and YouTube. We also have a website, www.reframingautism.com.au, which has a treasure trove of Autistic-created resources. Thank you and goodbye.