Transcript of Amplified: Autistics in Conversation with Reframing Autism, Episode 6: Sam Rose
[Music intro: ‘Winter is here’ by Elliot Middleton for Premiumbeat, a delicate piano melody which creates a hopeful mood]
Ginny: Hello and welcome to our sixth episode of Amplified: Autistics in Conversation with Reframing Autism.
I’m Ginny Grant, an Autistic advocate, writer, and Reframing Autism’s Communications Manager.
Today I’m so pleased to be chatting with Samson Rose. Sam is a program facilitator with The I CAN Network, mentoring Autistic youth, and is currently undertaking an internship with Reframing Autism. Sam is soon to complete a Bachelor of Arts/Psychology where they have been developing academic interest in the intersection of Autism and mental health, and the concept of neurodiversity more broadly. As a member of the Queer community, Sam is also interested in working at the intersection of Autistic LGBTIQA+ identity and unpacking internalised stigma, and they are currently co-authoring a book on this topic with Yenn Purkis.
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. And we are all about nurturing and celebrating Autistic identity.
[Music continues briefly]
Welcome to Amplified, Sam! Let’s start with your Autism journey. Could you tell us a little bit about when and how you discovered you’re Autistic?
Sam: Yes. Hello. I felt diagnosed, when I was around 19, or 20. I think I had kind of come to the conclusion that I was autistic after doing a Gender Studies class, and we spoke a lot about the differences between how people hold their bodies, and how people communicate through nonverbal body language and how people change the intonation and voice to kind of perform some kind of gender, and I realised throughout the class that this was stuff that I’d thought about a lot already. And I was quite surprised that we were learning about it because for me it seemed like a really big part of how I kind of acted in the world, and it was shortly after that that I was starting to think about how much I, I started to, I was mimicking other people’s body language to try and fit in. And I think the word mimicking must have rung an association, like I was very aware of this idea of mimicking in relation to girls with Autism, which was at the time, something that was becoming more understood and I think was one of those steps to realising that Autism is much broader than the narrow stereotypes that we were originally presented with. And so I started to google those kinds of things and realise that finally I’d found a set of descriptors that I could really, really identify with, and shortly after that I realised that I really wanted to seek a professional diagnosis, and so I did. I got my diagnosis just before I was 21, and it was a real relief, and I think it really kind of helped secure a sense of identity, and it really helped with my, yeah, mental health as well.
Ginny: Sure, sure. So what was it like for you only realising and embracing this part of your identity in early adulthood?
Sam: In a lot of ways I wish that I had known earlier, because while I was in high school, and I think even the end of primary school, I started to struggle quite a lot with depression and anxiety. I think that a big part of that was that I didn’t really know myself and I developed a bit of a mask that came across as quite obnoxious I think in, in, into high school which I really didn’t like in myself, and I used to get really frustrated at myself for kind of not being able to take off that mask, and I think a lot of it was because I felt insecure and I was unsure of what to do and so I would kind of act out as a way to try and disguise that insecurity, I suppose. So, when I did eventually get the diagnosis I feel like it gave me a bit of a new lease on life. I was able to reframe my perspective of myself. I was able to really start to look at myself from a lens of a bit more compassion and kindness and also there was a level of curiosity there that I hadn’t been able to access before because there was so much confusion and, and uncertainty I think kind of blurring that self-exploration. And so, yeah, I really think that embracing this part of my identity in early adulthood, I mean, better late than never. It really, it really did help me to understand myself and accept myself a lot more, but also in terms of looking after my mental health it just meant that I was better able to manage my anxiety and to manage burnout. I realised things like sensory differences, like I realised that I found it quite difficult to block out sounds and things, and so just trying to give myself more time to myself and more quiet time and regulating how much I was socialising. I realised that I was struggling with a lot of social fatigue or social hangovers, and so being able to manage that was, was really helpful as well and not be annoyed at myself for not being able to hold up relationships to the neurotypical standards, I suppose.
Ginny: Yeah, that’s, that’s really interesting, and I think quite relatable for many people who might have received a diagnosis or self-identification a little bit later in their, in their lives. You’ve, you’ve described Autism as a deep fascination of yours. How did that passion develop?
Sam: The passion definitely developed from my own journey of self-exploration. I think that beforehand I definitely didn’t have an interest in … I’d always been interested in development, and I knew that I wanted to work in psychology and I really liked the research side of things, but I didn’t, never specifically had an interest in Autism until I realised that I identified with it. I think that I was in two minds about being Autistic for a really long time, because I would describe myself as quite sociable and I’m good at sports and I’m interested in caring for other people and I’m interested in psychology, and all these traits are quite important to me but I saw them to be in conflict with all the stereotypes of what Autism seems to be. But the more I read about it, the more I realised that there was just so many gaps in the literature and so many assumptions that were being made that were just not founded on, on really anything. And so I just was so fascinated at this kind of pull between, I guess, the internal pull between me trying to figure out if I was Autistic or if I just really wanted to identify with something, to some kind of group. And what I realised in the end is just that: the way that Autism is framed is just completely … it just completely misses the mark. It comes from such a medical gaze, and I really think that by embracing the lived experience side of things, you can really start to understand how, like, what Autistic empowerment looks like. Because I think that, yeah, when Autistic people have really strong mental health and are doing really well and feeling good in themselves, it looks quite different, I suppose, to what non-autistic people might, kind of, think. I guess one example would be, I know that when I’m feeling quite good I really enjoy spending a lot of time by myself doing my own hobbies and, kind of, I can, I can entertain myself in my own solitary interests. I think that from a non-autistic viewpoint, some people would think that I was withdrawing or isolating and that that would be a red flag that maybe I was struggling with my mental health. But in a lot of ways it’s quite the opposite. So, I think I find that just that how you can slightly shift the perspective, even just the slightest way to think about Autism as not a disorder, just as a different, yeah, a different set of wiring can really change the rest of the narrative, and it has so many implications when you look at Autism from a, a strengths-based perspective. So yeah, it is totally fascinating.
Ginny: Yes, absolutely. We would … All of us at Reframing Autism would completely agree with that. Can you tell us about some of your other interests and passions?
Sam: Yeah, I try to … I actually … I really try to not spend all of my time researching and learning about Autism, because I think it can kind of send me into a bit of an existential spin from time to time. So I really try to engage in other interests just as a way to let those brain muscles, I suppose, have a rest for a while, and because I do a lot of work at my computer, I, I figured that video games are, kind of, off the, I can’t do video games because I really need to be having some balance outside of my computer, and yeah I think gardening is just a really, really nice way to potter around and it’s, it’s quite, you can kind of do it quite mindlessly but you can also do it quite mindfully, I suppose. I think I really enjoy, basically trying to get out into nature as much as possible just as a bit of a contrast to being in my room which I do love being there as well. So I’ll try and, yeah, do hiking and do camping and gardening. Especially since lockdown started last year, I’ve really started to take that a lot more seriously and I’ve been growing lots of vegetables and starting to grow flowers and stuff now, which is really nice and I’ve gotten super into composting as well because I suppose I’m engaged in the whole, kind of, that, life and death cycle of gardening where you’re constantly kind of having little things to attend to but if you go and, you know, watch your strawberries plant, for example, every day, it just changes so much. And so I love being able to really go and have a good close look and just keep an eye on things and just see how, how well everything kind of grows when you attend to it, and when you keep an eye on it and make sure it’s getting all the different nutrients that it needs. And of course, the more that I do that, the more I start to link it back to thinking about Autistic wellbeing and how important it is to take care and pay attention to all the little, kind of, parts of people that I’m, you know, mentoring or even just in the academic sense, it all kind of ties back onto itself, though. I find gardening and being out in nature, a really nice way to just reflect on everything. It’s just such a good metaphor for all aspects of life, so that’s my downtime.
Ginny: That’s, that’s lovely. Why and how did you become involved in advocacy?
Sam: I think I just realised that there was a real lack of lived experience voices, and as well there was just a real lack of advocacy for disabled people in general. A couple of years before I started working at the I CAN Network, I was a disability support worker. I worked with people with, kind of, quite high and complex needs. And I think that, and perhaps this was, this is partly, I just started on my Autism diagnosis journey at that point, and so perhaps, I had, was able to maybe relate to the clients in a, in a new way. And I was able to kind of have a lot more just empathy or understanding but I found that, I found it really upsetting how a lot of the people were treated and I, I really felt like there was a lot that people wanted to express where they weren’t given the chances to express themselves. And just because they don’t express themselves in the, in the expected way, people just kind of assumed that they didn’t have anything that they wanted to say, but it was a really, I don’t know, inspiring isn’t the right word, but I found that before working in disability I quite struggled with a sense of, kind of, having a sense of meaning in my life. But when I was working in disability I realised, like, this is an area where we need to be putting more energy into and this is an area that I want to lend my voice to lifting up and helping this, kind of, this population. And so, yeah, I suppose I see it now as, because I, because I felt it, because I really felt a lot of empathy, I just kind of saw it as a bit of a obligation, I suppose, to carry on that voice, and to make sure that I’m advocating for people who might not have the opportunity to.
Ginny: Can you tell us a little bit about your work with the I CAN Network?
Sam: I started working with the ICAN Network almost two years ago now. I heard about them through an Autism conference that I’d gone to, I think, in 2017 or 2018. And I heard that they did camps for Autistic people that was mentored by Autistic people, and I just thought it was such a brilliant idea and I hadn’t seen it in any other of the organisations at this, at this conference, and, I mean, when the idea was kind of presented it seemed like such a no-brainer. Of course you want to connect like-minded people up together and have a mentoring program where, yeah, people with similar, a similar neuro, the same neurotype, working together with each other. And so, I kept my eye on I CAN Network for a while and I knew that I wanted to get a job there and I think after, yeah, after a year and a half or so I applied and I’ve been doing program facilitating and mentoring since then, and yeah, absolutely love it. It’s really, really nice; we do online programs, a few afternoons or evenings a week. We do school programs as well normally with like, maybe, 10 Autistic young people and I get to work with another mentor and, yeah, we have heaps of fun. It’s, it’s really great work to be doing because in some ways I feel like I get to be the mentor that I wish I had had when I was in high school, just be someone saying, like, I know that it’s hard but things do get easier over time and you will learn good ways of overcoming your challenges or your barriers and, yeah, it’s, it’s, it’s very meaningful work. I really enjoy it.
Ginny: Just reflecting on your advocacy work to date, what are you most proud of?
Sam: I suppose, the things that, like, make me feel like that kind of warmth, when I reflect back on it is when I think about, I think this is a, this is a advantage of working, like, doing on-the-ground work where you’re really working with people directly as you get that positive feedback. Afterwards, someone might say, you know, my anxiety levels drop down to zero every week when I come to this session or people when we’ve come on the camps will … We write, thank you notes, anonymous thank you notes to each other at the end of the camps and so everyone goes home with this envelope full of, we call them “warm and fuzzies”, which is just, yeah, people will just say thanks for, you know, being you or thanks for something that you’ve done or anything, and I find that just so heartwarming and rewarding, and I really hope that we are making that, that difference in young people’s lives.
Ginny: You have particular interests in the intersectionality of Autism and mental health, but also gender and sexuality. What do you hope to achieve in these areas in the coming years?
Sam: I think that all these areas seem surprisingly disconnected in terms of what you would see in, in the support services and even in the academia. There’s finally starting to be connections being built and a bit more discourse between these areas, but I think that often you would hear people talking about, for example, going and, going and seeing someone for, seeing a doctor about gender dysphoria, but they don’t have any experience in working with Autistic people or understanding Autism. And the same thing is vice versa: maybe a psychologist who was talking to someone about, about their Autism won’t have much of an idea about gender diversity or sexuality. And so, I think that I’d love to see discourses happening more and more in terms of this kind of thing. I’d love to do some work in academia. It … I think that we need to include more voices from people with lived experience of these intersections. I mean, of course, everyone has mental health. And I think it’s kind of assumed that Autistic people will just have poor mental health, but that of course doesn’t have to be like that. A lot of the poor mental health comes from stigma and people internalising that stigma and feeling ashamed about themselves. I think that, I would love to be able to help the community to overcome that kind of stigma, which has sat over the top of our population for such a long time. I’d really love to do some work to help alleviate that, and just, yeah, bring, bring more acceptance into, into the rest of society, and I think as well like there’s so much stuff that I see Autistic people doing and working on and, and ways of, kind of, being in the world that I think should totally be exported into mainstream society as well. I think that very much there are a lot of accommodations you can make for an Autistic person that will benefit the rest of society as well. The classic example is if you make a classroom quieter and maybe less visually loud, then all kids in the classroom will benefit from that. It’s not just the Autistic kid who might have hypersensitivities to sound and noise. I think everyone will benefit from that, so I just love to see a broader adoption of these accommodation strategies, and it’s quite simple, really.
Ginny: That sounds wonderful, and we really look forward to following your journey in the years to come.
Thank you so much for your time, Sam. And thanks to our audience for listening to this sixth episode of Amplified.
That concludes season one of Amplified, but don’t worry, we will be back with more awesome Autistic voices in the coming months. So stay tuned!
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.