The Middletown Centre for Autism Podcast
The Middletown Podcast features interviews with leading thinkers and practitioners across the autistic and autism community. Conversations are autism-affirming and neurodiversity-informed with a focus on the lived experience and knowledge of our community. Episodes highlight issues impacting autistic people and we share ideas for family members and school staff who are providing support.
The Middletown Centre for Autism Podcast
Neuroconvergence with Jody O’Neill
On the Middletown Podcast we chat to playwright, accessibility consultant and community activist, Jody O’Neill. She discusses Neuroconvergence, a new initiative that is building community and celebrating autistic creativity.
You can find out more about Neuroconvergence here: https://www.neuroconvergence.ie/
Welcome to the Middletown Podcast. I'm Kate Hughes, I'm a researcher at Middletown and I'm also Autistic. In this episode, we chatted Jodi O'Neill, Autistic Writer, Performer, and Accessibility Consultant. More recently, Jodi is part of Neuroconvergence, a collaborative mission to bring together neurodivergent folk organizations, families, and practitioners. Through events, they're building community and creating conversation. I chatted to Jodi about building community, supporting creativity, and the importance of representation. I hope you enjoy our chat. I'm popping in before our chat to say that during our conversation, Jodi mentions an event that's coming up in December. Well, don't worry if you're busy with the Christmas rush because that event has now been moved to January. But now let's get into that chat. Jodi, thank you so much for joining us on the podcast. It's lovely to chat with you. I suppose I wanted to start with a very sort of maybe a simple question in a way, and the question that lots of people want to know what exactly is neuroconvergence?
SPEAKER_01:Okay. Um, so Neuroconvergence is a collaborative platform uniting neurodivergent individuals, organizations, families, practitioners, and advocates into a shared ecosystem of understanding, creativity, and change. And that's a lot of words. Um, but essentially uh what we're doing is we're looking at bringing people uh together to look at how we can, you know, align our understanding of neurodiversity and our understanding around what the sector is and what it needs, and what individuals need and what organizationals need in order to thrive. Um we do that through um bringing people together for festival gatherings and events, um, but also through partner meetings where we uh bring together stakeholder organizations and individuals to start exploring what a common agenda would look like uh for the neurodiversity community and to start defining goals and actions. So it's kind of a dual idea of building community, but then also hosting really inclusive, accessible events for the community so that we can make friends, so that we can have enjoyable experiences, uh, so that we can start to articulate our lived experiences and so that we can, I suppose, hear ourselves reflected through the um hear ourselves reflected through the through the experiences of others and to kind of create a resonance, I think, where we start to look at the the things that unite us rather the things than things that that make us that divide us. Does that make sense?
SPEAKER_00:Yeah, absolutely. And was there a kind of particular moment or collection of moments that sort of made you, you the team, yourself and the team, kind of go, okay, we really need this?
SPEAKER_01:Yeah, so it's built really organically. And it's that's the lovely thing about it is that it's still growing, it's still changing and evolving, and it will continue to do so. Um, I suppose the sort of like inciting moment for me was um I I'm a swimmer, I'm a sea swimmer, and um and a friend of mine who also swims have been saying for ages, oh, you have to meet my brother, because um my brother is uh the parent of an autistic child and uh would love to chat to you about your experiences. I suppose for context, I make a lot of in the last seven, eight years, I've been making a lot of work um about neurodiversity um in the arts, about expressing the neurodivergent experience. But because of COVID, my work also pivoted into kind of an advocacy uh facilitation speaking and organizational role around bringing the neurodivergent community together. Um and then by pure chance, I uh got chatting to this person by the sea who turned out to be Peter O'Brien, who's the director of and founder of Happenings, um, who create uh sustainable community events, like they run yoga in the park all somewhere, they would put on screenings, um, and we started to speak about our experiences um as neurodivergent people um and as parents. And Peter, I had just uh put on a festival called Neurofestivity in Cork, and Peter had just uh put on an event called Sensory Sounds, and we started to kind of think talk about all the ways in which we were aligned and all the ways in which we could um bring things together. And Peter was also working uh with uh Adrian Murphy and um Michelle Van Bailey on sensory sounds. Um and both of us kind of had a network of people that we were like, oh, and actually this person has something to offer and this person has something to offer. And if we can get all those people in a room, then we could start building something that is reflective of really broad ranges of experience and that uh harnesses both of our kind of skill set in terms of in terms of what we can bring, and then Michelle's, which is again very specific in terms of um like research and academia and but also like running webinars, uh running information sessions, um, and and she's also a yoga teacher. So it's it's a lot of a lot of people on our core team have quite a diverse set of experiences, and I think um that's what's allowed us to kind of build neuroconvergence together. I suppose we felt a little bit as well, like you know, you get diagnosed as a thing. So I got diagnosed as autistic. Um, and through my then research and through my understanding of my own autistic experience, I was also going, but hang on, I'm not just one thing, I'm also probably ADHD, I'm almost certainly dyspraxic. Um, I don't have like money and resources to go and get all those diagnoses. So, what is there that represents the entirety of me as a person? What represents our children as who they are and what platforms kind of give them a narrative to identify themselves and their experiences and to allow us to do the same. Um and it felt like we're quite divided out and kind of put into, okay, well, that's your box now. You're in autism and you're over there in ADHD. But actually, like what makes a family work together when all of the people in the family experience a little bit of all of those things. Um, and so it was more about kind of building community around that. We just had a perceived sense, I suppose, that everybody is working really hard within the, you know, within their mission policies and their mission statements uh for maybe one particular kind of neurodivergence, and that's needed, but something else is needed as well.
SPEAKER_00:Yeah, yeah. And that's actually something that I was really excited about when I saw the approach that you guys were taking because it is so inclusive and because it kind of assumes that none of us are kind of in one little bracket. You know, we all, whatever sort of mind we're bringing, whatever experience we're bringing, we all kind of blur those lines quite a lot. So I think that's really lovely and really important to think about. Um, and I know you've already had a couple of events. Um, can you tell us about those?
SPEAKER_01:Yeah, of course. So we kicked off with a pilot event um at Richmond Barracks, which was at midsummer uh of 2024. Um and so the structure was leading up to that. We had meetings with some uh partner organizations like As I Am, um ADHD Ireland, Dyslexia Ireland, Dyspraxia Ireland, Neurodiversity Ireland, kind of bringing people together for initial conversations. Um, we had on that day uh a facilitated meeting for two hours in the morning um with representatives from about, I would say, 30 different organizations and advocacy groups. Um, it was facilitated by an organization called Connect the Dots, um, which is about connecting the dots and helping people to find common agendas. And it was fantastic. The like the feeling in the room, the generosity in the room, the collaboration between people, and also the dissent between people, which I think is really healthy. We have to have a safe space where we can have those conversations. Um, so and but the the equity of it as well, like the lack of hierarchy, I think was something that really struck me was that people were just sitting around tables and everybody was milling into these shared documents. Um, and I think that really validates people's experience when they feel like I'm on my own in this, and you know, that organization over there has like everything and I'm just fighting in my little corner. So we're kind of like bringing everybody out of their corners into a shared space. So that was the first part of that day in June of last year. And then the second part was kind of a four-hour family festival. Um, so we had a beautiful day. We had an outdoor stage, we had a workshop, two workshops inside with fighting words for kids, um for younger kids and teenagers. Um, there was a workshop run by Neurohive. Ian Lawton is one of our kind of uh core group um on neuroconvergence, and he facilitated a workshop um about I suppose thriving as an adult. Um if if you haven't been diagnosed until later life, you haven't had access to that and access to that knowledge about yourself. How do you then build a life where you can thrive? Um so there was a a range of things. There was uh presentations about AAC, and um, I think Max Wheelen was one of our our uh speakers on on that. Um and then comedy, drama, uh music, um uh and and and information stands. So that's a really also a really uh key part of it is that we'll always have kind of a set of information stands where people can um can speak to the people who are running the organizations and ask their questions and make connections. Um so it was a really vibrant day. There was a really, really lovely energy around it. We had put a lot of work, I think, into facilitating it as an accessible event and as being inclusive as possible, and with the knowledge that we were going to get things wrong because I don't think you could do this perfectly. Um and uh and then and Senko supported it as well. We had the Senko bus outside, so there was like lots of sensory play areas for kids. Um so following that, there was a gap because we didn't have funding to sustain. Um, and we were we had to go and and source that. And uh we were really lucky to be awarded a significant grant from Rethink Ireland. Um, and that's enabled us to set up a partnership with UCD, um, who are our kind of main venue partner at the moment. Um so on the 18th of October, we had a similar event um at UCD, but expanded. Um so this time we had cinema screenings as well for kids, uh, we had art workshops going on, we had a range of panels and talks and speakers. Like there was almost too much. We'll probably whittle down the program because some of the feedback that's coming back is that people couldn't choose what to go to, and that was a really hard thing. Um, and we learned so much from doing that event as well in terms of accessibility, in terms of moving into a new space um in like environmentally, what we would do, but and we will do differently next time. So it's um, but it was a really successful event again, and again, the partners meeting was such a significant um part of that day. So I saw a pose following on from that. We have a smaller event in December and then a larger event again in in March of next year. Um and and then possibly something else, but we're still kind of we're in a sense, I suppose our mission at the moment is to really establish who we are in this moment, what our key goals are, what our goals are in the kind of larger um umbrella of of trying to bring together people's voices and advocate for for for change. Um so we're we'll be running these kind of, I suppose, entertainment festivals, inclusive festivals, but also in the background, we're like working like crazy to secure funding going forward and to kind of continue refining and defining who we are and where we want to present ourselves, I suppose, within a space where everybody's already doing incredible work. So, how can we uh amplify that work and strengthen that work and make uh everybody's lives easier and not kind of replicate what other people are already doing? Because I think that's where things can get really sticky, is when people feel like actually you're like we're already doing that. Um, so why would you do it again? That we have that we kind of really look at refining it, our unique role within the sector.
SPEAKER_00:Gorgeous. And I I mentioned to you that um I know someone who is sort of new to their diagnosis and they're kind of exploring what that means to them, and they went along to the the UCD event, and it was just it meant so much to them to just feel like they were part of a community. And I wouldn't imagine they said a word to anyone to be honest at it, but just to to be there and be part of the community just meant so much to them. So yeah, it's it's a lovely thing that you're doing. And uh it is the the December event in UCD again?
SPEAKER_01:It will be in UCD, yeah. So we're still just refining exactly what that's gonna be at this point. Um there will be a public aspect to it, there will also be a partners meeting, but it'll be smaller in terms of we used like 10 or 15 different spaces in UCD in October, and um and we feel it's kind of it's we want to do that again in March, but in the meantime, we want to have a little kind of bit where we're kind of the squeezy bit of the accordion where we kind of bring things together, consolidate, refine, have conversations. We will have like interactive workshops and um and uh entertainment experience as part of that. So I think it will be a nice thing for the public to attend. Um, but at the moment we're kind of strategically looking at getting refocused on okay, what's the next um, yeah, what are what are the next steps for us?
SPEAKER_00:Brilliant, very exciting. And then I suppose I wonder about yourself as well, as part of all this and with all of the work that you've done. Have you always been creative? And was that sort of something that was encouraged when you were a young person?
SPEAKER_01:Yeah, I think I have always been creative. Um in a sense, so I was like a ballet fanatic as a kid, and in a way, like like those classic art forums, ballet is probably the least creative art forum you could be involved in because like it's very rigid, there's a very finite set of things that you can do. Um but I worked really hard to be able to do them. Um, and I think then like I've always been writing um because I've always been quite introverted and I've always been recognizing patterns in the world, but wanting to kind of sort of channel them through myself and then articulate them in a way that other people could understand or see or share. So that's always been there. And my parents were hugely encouraging of creativity in us, and we were really, really fortunate as kids that um uh I mean it probably you know financially would have worked out better if they hadn't been more encouraging of us being accountants, but they could see there were three of us and we were all terrible at sports, and we were all kind of naturally uh leaning into creativity. And I think um we we grew up in a in a house when we we moved a lot when I was younger, and I think that's another um another facet of creativity in a way sometimes is that when you're constantly shifting worlds, you're constantly having to find new ways to articulate yourself within that and to articulate your experience within the world. Um so we we moved a lot and we had a house which was kind of a wreck for most of the time that we lived in it, but had a lot of space. So we we had the luxury of like I had space to dance in. My brother had space to create like large works of art in my other brother, could like play the piano or like you know, whack out music as loud as he wanted. Um, and that's a huge privilege and because it certainly wasn't recognized that I was neurodivergent, but it was recognized that I could be who I was when I was in the context of my family without any questions being asked.
SPEAKER_00:Gorgeous. That's really, really lovely. And then the the work that you're doing through neuroconvergence and then also through all of the writing and and and that that you've done um is very much sort of it allows the community, I think, to to see ourselves. Um and is that what does that sort of representation mean, do you think, to to yourself and to the community?
SPEAKER_01:Um so I yeah, I think being seen is a huge thing. And I think it's interesting, like even um like we would have kind of first been in contact, like back when I was making what I don't know about autism, and that journey culturally that Ireland has come on in the last uh that's only I don't know, it's only six years, I think, um, or like you know, maybe seven years since I first kind of started researching it. But it's the country has transformed and the landscape has transformed. Um, so in a sense, it's great because that play isn't needed now. But at the time, it really was. And so many people came to me afterwards and said that they sort of diagnosed this as a result of seeing it, that they understood themselves for the first time, that they, you know, that that shifted their how they parented or how they taught. Um, because I think like we understand the world differently through arts and creativity. So it's one thing, um, and I remember going to a Middletown course for the first time and being like, oh my God, it's blown my mind. And I still talk about things that I learned in that that transformed um my how I looked at kind of neurodivergence within the world. Um, but through through art, I think we can understand something emotionally. And I think when we understand something emotionally, when we feel it, then there's an impetus to change, or then there's an impetus to investigate. And so I think that kind of representation is we can understand through learning, but we really accept and we really um, you know, take something in and we really empathize and we really shift who we are. We're changed by an artistic experience. Um, and I think that's been that's kind of why I've sort of kept at it, I suppose. And you know, what I'm offering has has evolved. Um, but I think there's a a core there's a validation for uh people in collectively seeing something or reading something or listening to something and going, yeah, that like we we are represented and we're recognized, and we can I suppose feel less like I would have felt for a lot of my adult life like I was sort of like less than or you know, inadequate or failing at something. Um, but I think through the work that I make because I very focused on creating accessible environments as well, it's it's I want to kind of create the living, breathing proof of um I suppose the social model of disability, which I know is really is flawed in some respects, but I do think that a lot of the time it's experiences and environments that are disabling and that um and that when you see something managed in an accessible way, then suddenly a lot of the the barriers are are gone. And I think that's so that so we can represent our best selves, I think, in uh in an accessible environment. So it's that kind of dual thing between accessibility and also artistry making something that's really um meaningful and not tokenistic. Um and I think you know, for for parents who saw what I don't know about autism, and the cast was quite diverse in terms of their needs, their experiences, their diagnoses. Um but for a lot of parents came to me afterwards going, it gave me in a system where I'm constantly feeling like my child is being failed, and therefore uh looking at deficits, it made me go look at the possibility, look at the scope, look at this like 21-year-old on stage in the national theater, rocking it, and and all of the things that you know that actually my child may show me that they can do in the future. Um, so I think that was really meaningful. And it's also why we kind of had a another, and I like having with my shows a part where the audience gets to speak to the people who have been on the stage as well, because I think you really then kind of share a moment um with people in a real way. Um and I think there's there's there's huge value in that.
SPEAKER_00:Yeah, absolutely. And is there any piece of the art of any medium that you kind of think really well represents the autistic and neurodivergent experience that you wish had been around when you were younger?
SPEAKER_01:Oh gosh. Yeah. It's not even that I so so I I think I was really lucky in that I'm a big reader. And I think that like a a lot of writers, knowing it or not knowing it, are neurodivergent. And so I think if you connect to books, then you're very likely to connect to people who are like you through the characters. So a lot of the, you know, the sort of you know, the slightly odd child might be the center of a lot of books, and they're kind of extraordinary in that and they're successful in that, and they're successful because of it. You see that a lot in literature, and you see it less, you know, in in film and in television, it's more likely to be the bright shiny extroverts that are like rocking the world. So I think I think it was more like it was by chance that I was a reader, but it's really fortunate that I was because I think I found not only um people who were like me, but also like because I was a massive masker, like people to model my behavior on and like words to say that could be useful in my life. So I was kind of uh supported in that I suppose I think what I would have loved to have seen uh more in relation to my adult life is like books about parenthood and books about like being a mother uh and being neurodivergent or autistic. And I think they're starting to appear now, and it's really exciting. Like there's um like it's it's a totally mad book, but it's a book called Night Beach, and I don't know if the author identifies as neurodivergent, but I was like, oh my god, if somebody had given me this book when I was, you know, when I was pregnant or when I was like in my first six months of mother motherhood and trying to figure out like the total loss of control that happens. Because I think there's not enough conversation around that experience of going, like, I had built a life because I had utter control over it, and then small person rocks in. I have no control, I've no autonomy anymore, and I don't know who I am within that. And that's when a lot of like the kind of, I suppose, more challenging aspects of um my autistic experience would have become apparent to me, I suppose. Um, so yeah, that I think I'd love to see more of that.
SPEAKER_00:And then would you have any advice for parents or our carers who are supporting an autistic or neurodivergent young person who's creative and how how do they kind of foster that creativity?
SPEAKER_01:Yeah, I mean, it's leaning into what they love, isn't it? So we creativity is broad, and sometimes we think creativity is like your kid has to go to an art class or your kid has to go to speech and drama, or you know, in order to be creative, it's finding finding what works and pursuing that and really supporting that rather than you know, trying to sort of fit an experience onto somebody that isn't actually going to be empowering for them. So um, I feel like for example, my my son draws has always drawn a lot and it's really, really regulating. But uh until this year, he never wanted to go to an art class because it wouldn't be the kind of art that he does. So it's accepting that like very niche corner of somebody's experience. Like I remember going to KCAT and visiting the studios, and there was an artist, and his his his art was to collect the chips of other paintings in jars. So, like thousands and thousands and thousands of multicolored chips. That's like it's beautiful. It's really it is art, and it's knowing that actually sometimes the lens that creativity and art is presented in within childhood is a really neurotypical version of what art is, you know. It's like you'll be a good average at like this, this, this, this, and this, rather than kind of leaning into like they may never want to go to a class. Um, but then I think it becomes it's shifting in teenage years. So I think like in teenage years, things like youth theater are an incredible, because they're it's not prescribed, it's really inventive, it's all looking at role play and um and improvisation and and it's youth theater, I think for me was a huge part of my teenage years. Um, and it's I always think about it's like finding community not by fitting, but by being with all the other people who don't necessarily fit either. So um, and I think things like fighting words are incredible as well. I know their fighting words are nationally um present. So um there's find anything around where there's an acceptance of difference and an applauding of the fact that somebody isn't necessarily good at all of the things, but might be extraordinary at one of the things, or might not even be extraordinary about any of the things, but they might be getting something from it, and you may not be able to see it through a picture or a dance, or they may not want to participate in the shows. But like loads of the incredible designers and lighting designers and stage managers and uh directors who you don't see on stage, but they're they're behind the and they all started through a youth theater experience. So you kind of go, it's you don't know where it's gonna go. So just like open up the question without looking for answers, without looking for a product, I think at the end of it.
SPEAKER_00:Yeah, absolutely. And then my very last question for you um is is there any advice that you give to your younger self if you could oh I think I would try to be less afraid of what everybody thought.
SPEAKER_01:So um, and and this took me such there's two things, I suppose. One is being less afraid of what everybody thought, but also realizing that like my sense of what everybody thinks, uh, which I assume every I walk into the room and everybody's like, oh my god, that person is so inept. Uh not everybody can think that. Like statistically, that can't be true. And yet, like until about four years ago, I really thought, okay, well, you know, they think this and they think this, and this is the narrative, like, and kind of putting that narrative onto people. And I was so like stymied, I think, by by other people's perceptions or my perceptions of what other people might perceive in me um as a as a kid, um, and so determined to like not be called out on anything and not stand out for any reason. Um, so I would probably kind of ask myself to like, you know, yeah, like not put myself out there, but like try things and not be worried um that something catastrophic was going to happen as a result. Um and then I think the other thing is just around like good enough is good enough. Um and that's a it's kind of a new thing for me, but I think there's you know, there's such an element of perfectionism sometimes, and it's not useful and it's it gets you in the way of doing things and it can also stop you completing projects. And I think that's a huge thing in terms of creativity, is that like project completion can be really hard. So we might be creative, but we have to find a way to just get something down, like the first bad idea of something, and you never know where that's gonna go. Um, so that's been a big thing for me the last number of years, um, that I wish my younger self would have been a bit more aware of, is is that it's it's okay. It doesn't have to be the best possible version of something that that is good enough is is okay and better sometimes because it leaves the door open.
SPEAKER_00:Thanks so much for listening to the podcast. It is a conversation-based interview designed to stimulate thinking and hopefully support the development of practice. It's not intended to be medical or psychological advice. The views expressed in these chats may not always be the view of Middletown Center. If you'd like to know more about Middletown, you can find us on X at Autism Center and Facebook and Instagram at Middletown Center for Autism. Go easy until next time.