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
Autism Europe Congress with Adam Harris
In the latest Middletown Podcast, Adam Harris joins us to chat about the upcoming Autism Europe Congress. Adam and Cat are both involved in organising the Congress, and they discuss why hosting the Congress in Ireland is important, what they’re most excited about and what they hope the impact of the Congress will be.
Welcome to the Middletown Podcast. I'm Kat Hughes, I'm a researcher at Middletown and I'm also autistic. In this episode, I chat to Adam Harris, ceo of as I Am, and all around good egg. We are both excited to chat about the Autism Year of Congress, which is happening in Dublin this September. As I Am are hosting the event over three days in the RDS, I'm delighted to be involved as chair of the scientific committee. We chatted about why it's so exciting to have the Congress in Ireland, what we're most excited to see and what the lasting impact might be. Have a listen, adam. It's so lovely to have you on the podcast. I wanted to start by asking you what exactly is the Autism Year of Congress?
Speaker 2:Well, thank you so much for having me on and I think does anybody know who knows about what the 14th Autism Year of Congress is all about. It's yourself, capa, for all the leadership you've been providing and indeed the support of your colleagues in the Middletown Centre for Autism as we're preparing. I'm very excited now, only a few weeks out, to host the 14th Autism Europe Congress, so as I am. Ireland's autism charity will be the first autistic led organisation in Europe to host this meeting that only takes place every three years. It's the first time the event has come to Ireland and really it's a space in which autistic advocates and researchers and practitioners and families and community members can come together really to share best practice. We were delighted to win the opportunity to host the Congress of Dublin three years ago and we've been building up to the big dates of the 11th and 13th of September for some time now. But I suppose from the outset we wanted to really make sure that Congress did two things. Number one, that it really, I suppose, lived the values of our organisation in terms of being autistic-led, accessible and neuroaffirmative. So we were really excited to put together a scientific committee bringing together leading experts from Ireland and even right across the world, making sure that that scientific committee had a majority of autistic researchers and brought together a diversity of experience within the autism community as well. One of our responsibilities as the host organization is to select the team and rather than just select or impose a team.
Speaker 2:We ran a consultation process across Europe and that landed on the theme of quality of life, research policy and practice. And I think it is important to say the Autism Europe Congress is a scientific conference. It's probably a little bit different than if you come to the Adliam conference. At the Middletown conference there is kind of a very formalised process around how the agenda is set and around, I suppose, the academic approach to the literature. We wanted to make sure that there was a real application of learning, that if people came and gave up their time for three days that no matter where they work in Europe, no matter what profession they're a part of, no matter what their experiences as an autistic person is across the life cycle, that they'd have real applied learning that they could bring back to their day-to-day lives to inform practice. So I think really what you'll see across three days is content that is about research, that is to inform policy and then is also to inform day-to-day practice across Europe as well. I think there's around 13 sub-themes in the conference that really capture the range of priorities that exist within the autism community, you know, from access to assessment and diagnosis, to experiences within broader society gender, sexuality, mental health, inclusive education, employment and just about everything in between. And I think the second thing we were really keen on was that in one sense, it's very important to have a conference, but what does it actually change for people living in Ireland into the future? You know, for three days in Dublin we're going to have a very serious concentration of expertise subject matter expertise and how do we make sure that leaves a lasting legacy for Ireland's autistic community. So we've set ourselves some big goals around, really, I suppose, documenting the work that we're doing to make this event as accessible as possible, in the hope that those learnings can be applied to future events and policy and consultations and so on.
Speaker 2:In Ireland, the defining issue of the next decade is breaking down barriers for autistic people. We're seeing more autistic people access diagnosis late. We're seeing more and more autistic people age out of school and we need to make sure that the workplace is ready to meet the needs of our community and, I suppose, also access the talents and insights of our community. So we are hoping to leave a lasting legacy in terms of employment, in terms of a call to action for employers, and we've brought together some very serious corporate partners who are committing not only to support the event but to take action in terms of shifting the dial on that issue. And then finally, and I think timely, I'm conscious that we're coming together at a time in Dublin where there's a lot of really positive things going on.
Speaker 2:Dublin is a city working to become an autism-friendly capital city.
Speaker 2:We obviously just saw last year the publication of Ireland's first autism innovation strategy, but we also know that it's a time where there's darkening clouds gathering as well.
Speaker 2:We've seen a massive growth in misinformation over the last year upwards of 90% of people in this year's as I am saying, chance reports have seen a growth in misinformation. We're seeing some pretty ludicrous and dangerous statements coming from some governments in some parts of the world about autism that pose a real risk to our community in terms of mental health and stigma and rights, but also actually pose wider public health concerns as well. So our conference is a chance to tackle that misinformation, to build capacity. We're working very closely with Irish policymakers to, I suppose, spotlight some key issues in that regard over the course of the three days. But also we'll be reaching out into the broader community while we're running the Congress and making sure that that learning is widely available not only to Ireland's autism community but also really to try and use the Congress as a platform to engage with the wider society here in Ireland and Europe about what it means to be autistic today.
Speaker 1:Brilliant, and it is. It's an incredibly exciting thing to be a part of because I'm on the scientific committee, as you say, and it's been amazing to have those get togethers with all those different people from those different perspectives and those amazing minds and have a chance to be from the committee about who's going to be coming and what we're going to be hearing. But also, I think what I've really enjoyed is how seriously everyone is taking it and an understanding of responsibility.
Speaker 1:Yeah, that's it, and how important it is that we represent as many parts of the community as we can, and I think it's something that we've all worked so hard on, yourself included and everyone else. I am in Autism Europe, so, yeah, it's been a real honour to be a part of this. Definitely, what are you and this is a tricky question, because for me it's like everything, but what are you most excited about seeing at the Congress?
Speaker 2:What I think I'm probably most excited for is to see the community come together. Most excited for is to see the community come together and you know, I think it's a real opportunity that only comes around every number of years to bring together so many minds from across the world. So there's some pretty incredible contributions and, whether that's the I think 13 or so keynote speakers, the scientific committee has invited really world-renowned experts like Liz Bellicano and Wen Lawson and Peter Vermeulen, and you know people from Ireland as well who are making a huge impact, like Dr Mary Darkey. There's such an incredible list of keynote speakers. I'm conscious I won't be able to name them all, but I think actually the thing that's equally exciting and where there'll be as much learning is in those conversations that will take place over the course of the three days, and I'm just excited to see where those conversations bring us and how they can really inform change here in Ireland and overseas as well.
Speaker 1:Yeah, absolutely. And I think, from my perspective, one of the things as a scientific committee that we've asked everyone who's coming. So we have our invited speakers and then we have lots of different sort of smaller presentations and then we've workshops and symposia. So there's a lot happening. But we've workshops and symposies, so there's lots happening, but we've asked everyone to think about what the practical impact is.
Speaker 1:I know, yeah, I've been to lots of conferences where it's, you know, very research heavy and you go, well, that's a really interesting theory, but you kind of leave going. Well, how do I apply that in any way to this practical work that I'm doing? So I think I'm really excited about how practical the talks are going to be and because we have people talking about sort of mental health services and Georgia Pavlopoulou is running a session about the work that she's done with the NHS and adapting mental health services and various different sort of physical health services, and I think Cara Diamond is going to talk about sort about how she's adapted education, and she's a researcher but she's also a teacher, so things have to be practical for her. So I think that sort of practical element is really unique and really exciting.
Speaker 2:I think it's brilliant and I think that was such an important approach that was taken, because how often do we hear from the autism community that both the expenditure and the autism community, that both the expenditure and the airtime that research gets can be so out of touch with the priorities of the community? And I think how the scientific committee has gone about designing the event in such a, I suppose, an example, a best practical example of co-creation and is going to lead to a very different type of event where I think people will really feel themselves represented and go away with things that can enrich their lives and the lives of the people that they support as well. And I think that was demonstrated in the huge demand for people who wanted to come and speak. I think in the region 950 applications were received for posters and oral presentations. I was just very glad that the Scientific Committee had to make those decisions as opposed to myself, but I think it shows the appetite that's there and the excitement that people have for the content and the approach.
Speaker 1:Yeah, definitely. And yeah, it was an amazing process to read through all of those abstracts that were submitted, and getting more and more excited as you read each one. Lots of brilliant minds will be coming, and it was tricky it was definitely tricky to pare them down. What do you hope attendees will get from the Congress then?
Speaker 2:So I think there's two pieces down, isn't there?
Speaker 2:I think what I would hope is that there's an opportunity to reach audiences who perhaps don't always come to an autism conference.
Speaker 2:So perhaps it's somebody who's a recently graduated professional, Perhaps it's somebody who's coming recently graduated professional, Perhaps it's somebody who's coming through the context of policy development, Perhaps it's a family who've never been to an autism conference before and want to learn more.
Speaker 2:And I think what we would hope is that people leave the conference with a real shift in a narrative that they see that you know, even in three years since the last conference, that we're seeing more and more of a neuroaffirmative approach take place, that we're seeing the voices and experiences and expertise of autistic people changing our understanding of autism for the better, and that people will leave with that new insight or new outlook on what we need to do, not to change the individual, but to change the society in which we live.
Speaker 2:And I think the other thing is you're hoping that, at a time where people are coming together, where there is a lot of negativity out there, where there is a lot of fear out there, that people will leave feeling empowered and they'll feel connected and that they will realise that they're part of a very strong community and you know progress isn't linear. In a sense you know that we've come such a long way in a short period of time and while things might seem challenging now, you know our community is too strong to not move forward and I hope people leave with that sense after the three days.
Speaker 1:Yeah, that's lovely, I think. For me, as you mentioned earlier, I think that idea of collaboration and being able to sort of meet people who are like-minded and then also people who are coming from a completely different perspective and having and that's what we're really hoping that it will be kind of a safe and comfortable space for people to to talk things out and try and understand other perspectives. And even some of the the talks that we have scheduled, we're bringing together people who wouldn't necessarily usually speak together. We have Peter Vermeulen and Wayne Lofts and we've Mary Doherty and Eva Lofts, who are going to kind of bring their own perspectives but sort of be kind of a worked example of that collaboration. So I'm hoping that people will find those brilliant minds at the Congress and be able to sort of work together afterwards and learn from each other. So, yeah, it's exciting.
Speaker 2:Yeah, it's really exciting.
Speaker 1:How does the Congress fit in, then, with the work that, as I Am do?
Speaker 2:I think that's a pretty great question, because I think, in many respects and I think this is very much reflected both in how the conference has been designed and also in terms of the content that people will hear over three days, and that is, I think, that you know, our vision is a society in which every autistic person is accepted as they are. Every autistic person is accepted as they are, and we believe that the only way we'll ever realise that vision is both by supporting autistic people, meeting autistic people where they're at, providing the right support at the right time, building capacity, but then critically also recognising that, unless we actually change the communities in which we live whether they're school communities, workplace communities, local communities autistic people won't have the same chance, and I think, over the course of the three days, we're really exploring both of those pillars in some detail. I also think, though, it's an enormous platform, you know. I think we've had really great engagement from state agencies around this. I think, obviously, there is an appetite in Ireland for us to be leaders and, you know, to punch people, by the way in so many spaces and I think the Congress provides us with a really important platform to challenge where we are at in some areas in Ireland where we need to see much deeper reform, education being a key example of that. But I think also, at a time where we have the National Autism Strategy, for us to really demonstrate in evidence, across three days of world-class research, the need to fund and support autism-specific research, autism-specific policy, autism-specific support is going to be absolutely critical, and I think you know there is a programme for government commitment to legislate for an autism strategy in Ireland and I really hope that this Congress will be a vehicle to make sure that we move towards that goal.
Speaker 2:Yeah, and of course I shouldn't leave out that, you know, over the course of a few days, people are going to be in Dublin, a city where we're doing so much work Like only in recent weeks, we appointed, with the support of Dublin City Council, our autism-friendly capital city officer, who's working towards that goal of making Dublin the world's first autism-friendly capital over the next three years. If you're a visitor to Dublin, be it domestic or international, you'll have the chance to visit some of the cultural institutions where we're doing accreditation, some of the tourist attractions, some of the hotels that we've supported. So I think my kind of hope is that you'll go to the conference and you'll hear about what the world could look like. And then, perhaps over the course of a few days, you'll go to the conference and you'll hear about what the world could look like, and then, perhaps over the course of a few days, you'll have the opportunity to see how that change can actually be applied in real time as well, and that will inspire others to follow suit.
Speaker 1:Brilliant. That's amazing. And then my very, very last question for you is completely different. Nothing to do with Congress, although maybe to do with Congress. That's up to you, but I ask it's how I finish the podcast for everyone. So what advice would you give to your younger self if you could?
Speaker 2:I was thinking about this because I'm glad I didn't have to think of the answer on the spot, but it's kind of an easy answer in the same time. So I think the name of our charity probably really says it all. You know, as I am, am and I think, like many autistic teenagers in the years building up to depending about they, um, the last thing I wanted to do was accept myself as I was. I wanted to be the same as everybody else. Even that was when that was overwhelming. I didn't necessarily want to engage in supports, even when they were offered to me. I wanted to conform, I wanted to mask.
Speaker 2:I certainly and this might seem hard for people to believe wouldn't have liked talking about my autism diagnosis, um, and I suppose, going on this journey with, as I am starting, writing the blog. When I was 16, you know, the greatest lesson I could, uh, teach my younger self was to just do that so much earlier. And that's what we're trying to do with as I am now. You know, just this year we launched a primary school program for the first time where we're going in and talking to primary school age children about the importance of, um, you know, autism acceptance, the steps we can take to build a more inclusive why actually creating autism friendly and autism accessible spaces doesn't just make things better for autistic people, it makes things better for everybody. So, yeah, I think that would be my advice to my younger self and to young autistic people listening as well thanks so much for listening to the podcast.
Speaker 1:This 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 Centre. If you'd like to know more about Middletown, you can find us on X at Autism Centre and Facebook and Instagram at Middletown Centre for Autism. Go easy until next time.