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
Universal Design for Learning with Zarah Doyle
Universal Design for Learning (UDL) is an approach to supportive learning that is growing in prominence. In our latest podcast we chat to Zarah Doyle, Training and Accreditation Manager with AsIAm. Zarah is an expert in the theory and practice of UDL. She shares her insight and we chat about her own experience as a multiply neurodivergent parent and professional.
You can also find an interview with Zarah in our latest Research Bulletin:
https://www.middletownautism.com/research/research-bulletins
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 Zara Doral about universal design for learning. Zara is a training and accreditation manager with as I Am, and she is an absolute font of knowledge when it comes to all things UDL. She has a brilliant way of explaining complicated ideas really, really clearly. We also chat about her experience as an autistic ADHD adult who was late identified. I found her so interesting and I hope you enjoy the chat as much as I did. That was all right. Thank you so much for for joining us on the podcast. I said I want to start with a very like a starter question. So what exactly is Universal Design for Learning?
Speaker 2:Okay, it's such a broad concept. So Universal Design for Learning is a framework for designing inclusive learning environments and providing multiple means of engagement, representation and action and expression to meet diverse needs of all learners. So essentially that is the definition, I suppose, but that is trying to, you know, define something in a sentence that is much broader than can actually be definable. So the framework is really really helpful to understand the concept. So you need to kind of do a lot of reading to grasp the understanding of what we're actually talking about. I'll do my best, though, in trying to animate it for you and make it real and give some practical examples.
Speaker 2:I suppose the origins of it came from architecture, so in the 1970s it was about making inclusive environments in the built environment and looking at different types of furniture that we use and, you know, having multiple options for navigating the physical space. So there's lots of names throughout history, say, from the 1970s, that we'd have like, uh, ronald mace and john mccluskey, all kind of in um the us. So you wouldn't really have very local kind of representatives of it and throughout kind of the history, I suppose, of udl. Um, I suppose most people would know the CAST framework and that comes from the Centre for Applied Special Technology and they actually developed the research-led element of UDL so applied it to the learning framework. So that's what we use today in terms of our guidelines. So that's our universal design guidelines, and the most recent one was actually released this year as well. So it changes all the time, it's modified. It's not something from the 1970s that we're still adapting. It is up to date and relevant and taking into account our everyday lives in 2024 and beyond.
Speaker 1:Fantastic, relevant and taking into account our everyday lives in 2024 and beyond, you know. So, fantastic. And yeah, as you say, it's a massive question to try and answer and I suppose as we go through our chat we'll dig deeper along the way. So do you find that people are kind of wary of particular aspects of UDL?
Speaker 2:Yes, and so it's really well-intentioned. It is a wonderful framework. It's powerful really if it's understood. But there are some valid criticisms, I think, in terms of, you know, from an autistic perspective, you know, and the support that needs to be very specific for an autistic person to be able to engage and learn and participate and communicate. And sometimes it can be still deemed as that one size fits all model in you know, it's kind of in a different disguise, you know, you're just really aware that it can be the default neurotypical profile that we're trying to support and facilitate.
Speaker 2:So that can sometimes be a barrier for people even learning about UDL because of the word universal in the title, you know, and it is misleading because it is supposed to be a framework that we're using for individual needs, not just for a wider kind of culture, like that obviously is part of it also, but we still need to individualize the supports that we're doing and apply that neurodiversity lens on top of it. So it's not necessarily just universal in its description. Like, if you think of all the different learning styles that we have, there's so much under the neurodiversity umbrella that we are tailoring to today that we may not have been aware of 10 years ago and we're actually openly talking about these things. So our culture has shifted. In education, we're a lot more inclusive in the things that we do.
Speaker 2:So it's really opening up the conversation and making sure that people have the framework to refer to when they need it, when a new need arises in that moment-to-moment interaction and oh, what can I do with this? You know this is something new, um, and it is that reference point. You know, that works really well, um, if we know how to use it. But I suppose the real experts in UDL and I'll probably talk about this later as well but are the autistic people themselves and also the people supporting autistic people on the day-to-day, particularly parents and caregivers. Because everything we do, every lens that we have over, even if it's our everyday personal care, you know we have to find different ways of doing this and it's outside the box thinking constantly. So it's having words for what we're doing, and UDL actually applies to a huge amount of what we do and probably 99% of it, you know, is a UDL lens over that. So it's great to have words for it.
Speaker 1:Yeah, that's so interesting because I think, yeah, so much of life as an autistic person or someone with ADHD, it's all about strategies, and you don't even realize the strategies that you're using because you have so many of them to do everything that you do. So, yeah, that's that's such an interesting way to look at it and really helpful way to look at it. I think that's very clever. Um, are there areas in education at the minute that you think kind of could do with a UDL revamp more than others?
Speaker 2:How long is a piece of string? So, um? So I suppose what I would be referring to, just as I work in, as I am, as you know, is's autism charity. So I'd be very close to a lot of the research within the autistic community and our findings, just from this year's same chance report alone, kind of highlight that reality that they've said. They've come back and said that 56% of autistic people in Ireland do not feel that the education system is inclusive or accessible to their needs. Now, that's a very small portion of the autistic population that have answered this survey, but it is enough to understand what the wider needs are. So we can take that reference and understand, you know that it's not really working for over half of autistic students. You know in different, like the ones that can advocate for themselves and that can tell us that they're struggling, and there is such a huge cohort of people that can't voice those things. And if we know that the people that have the voices to tell us these things, that can be empowered to provide that information to us, are telling us that it's not working, then I think we need to be listening and need to be kind of tuning in and figuring out what can we do to actually make that? You know, empowerment shift towards the autistic student and I think we also have 73% stated that they lacked equitable opportunities to thrive and contribute to their strengths or contribute their strengths within the community.
Speaker 2:So our schools are a massive part of our community. Everyone goes to school well, some obviously in different formats, but we all have to educate ourselves at some point and UDL is going to come into that. Um provision of support, regardless of whether you're in preschool, whether you're homeschooled, whether you're in youth services, you know, anywhere in the community can utilize UDL, and sometimes they think you know the, the wider population or educators might think, oh, it's only for the autism classroom or it's only for, you know, a very specific cohort of people that require this, but actually it's all people and what works for an autistic student will work for all students. So we're not disabling anybody else by using UDL and I think that sometimes is a common misconception. So I think the understanding of UDL could use a revamp.
Speaker 2:Just to go back to your question, like a more holistic and neurodiversity driven udl model is really required when it comes to supporting specific needs, um, and it has to really honor the diverse learning profiles. So, thinking about sensory needs, our communication styles, our social and emotional experiences of autistic students and how we support them and scaffold their learning, that's meaningful, you know, and very often we get stuck and that in itself the understanding is a massive barrier there. That's that's requiring a revamp, um, but you know, if we think about how we can reshape curriculums, look at our environmental triggers and stressors and all of the things that are preventing people, all of the barriers, basically, you know, if we think about how we can reshape curriculums, look at our environmental triggers and stressors and all of the things that are preventing people, all of the barriers, basically. So if we celebrate the fact that there is remarkable resilience, you know, and that intrinsic motivation to learn for autistic young people and it's not often celebrated Like you do have obviously we have Autism Acceptance, you do have.
Speaker 2:Obviously we have autism acceptance week in april and we have neurodiversity week in march, I think it is um. So throughout the year there are certain kind of milestones of celebration, but this should be something in our day-to-day, it's something that should be in our everyday conversation, that we're, you know, valuing um neurodivergent input into our curriculums, into our conversations, and ultimately that's going to have a more positive impact on our judgment and attitudes across all of society, and school has a massive role in that space. To be enabling that conversation. You know, I suppose, specifically like what, what we could do with a revamp and our curriculum development opening up the conversation, being casting the net a bit wider, thinking about, um, that co-design piece, uh, listening to neurodivergent input, um, how we represent neurodivergent minds throughout our curriculums. You know, and I have heard of quite a few schools now that are introducing it into their kind of book reports and their projects, into the mainstream curriculums as well, which is great to see representation, because it really does matter to be able to identify yourself in that content and not to feel othered. You know, when you about the, your typical characters that we've all been reading about for the past, however long the education system has existed, um, so it's, it's meaningful representation, I think, and that is really helpful.
Speaker 2:Um, I suppose the biggest thing for me and as an autistic student myself, one that went very much under the radar, um, but I was diagnosed much later in life, but the temporal environment for me was the biggest barrier. So all of the unsaid things within the environment, you know the pace, the timing and the structure of the school day if things changed all of a sudden, um, and you know there were things that you were just kind of told, oh, you need to get over this and just move on. Well, you know we're past that and it was something that would stay with you for a really long time after you'd had a difficult moment. And I suppose that compassion like you learn how to mask and it's not really what we want to be teaching people to do we want them to be healthy and have good mental health and all of those things can have a massive implication on the autistic young person coming up through the education system. So that compassion for when things change, when you struggle, you know, and your own understanding, your own needs and your social and emotional needs within the temporal environment as well.
Speaker 2:So that recognition that, um, there are certain times of the day that are noisier, um, or that are just unpredictable, like you know, if you think of primary schools going out in to the lunch yard, um, and that's all of a sudden your whole structure is taken away from you and you're expected to cope.
Speaker 2:It's very noisy, there's traffic, probably, there's school bells, there's all sorts of things happening and that can be extremely stressful, and some children are not allowed back into the school building for that break away from the chaos. So having that, I suppose flexibility around how we provide reasonable accommodations for young people is so important, and sometimes it's just more school driven and rule driven than it is for the individual. And I have, I suppose the more awareness of UDL and the understanding of how we can incorporate it across the entire day is going to be really, really beneficial and you'll see kids coming home from school going. I got my withdrawal break today, I got my sensory break, I was allowed to stay in today and read my book, you know, and it allows us to keep our social battery on an even keel. So we're able to engage with the actual lesson plans then. But it's really hard to re-engage when you can't do those things, you know.
Speaker 1:Almost impossible. I would say that and that was sort of indicative of my entire education because you know, similar to yourself, I was late diagnosed so didn't know why things were so difficult, but just knew that they were incredibly difficult and, yeah, to have had this.
Speaker 1:I remember the first time, as an adult working in sort of autism research, I went to the first autism school that I'd ever been to and, um, just to. I arrived just as break was ending and someone was counting down to sort of heading back towards the line and it just I was like this is so peaceful, I can't. I get like, if I'd had this level of peace at break time, I can't even imagine what life would have been like. Yeah, it's, it's amazing and it's little things, isn't it?
Speaker 2:it's not. It's always the tiny little things that make the biggest difference. And having that, that compassion for the little things, very often you're thought of as that parent when you go up and ask for their apple to be cut in a certain way and it's just because of the sensory preferences you know and you know that it's going to make their day. So just listen, you know we're not trying to be difficult, but sometimes it can be. It can feel like a struggle to advocate for those little things, but they do make a huge difference.
Speaker 1:And from your experience, Sarah, what are some of the most successful UDO adaptations that you've seen?
Speaker 2:I've seen some brilliant practice I really have. So just even developing those kind of zones within the classroom itself or in the school and having low sensory areas available as options for focus as well. So you know if there is a group situation happening, that it's a group that's facilitated in a much quieter space if there's an autistic person within that group, or being able to use your ear defenders in the classroom or your noise cancelling headphones or earbuds, and having those allowances make all of the difference. Flexible seating as well. So using stability balls instead of a chair sometimes is really helpful and helps with you know, or having standing desks and implementing open communication about sensitivity. So everyone talks about their preferences. So it's normalized and I thought that was just brilliant that people can just all say you know, I don't like and I do like, and this is how I learn best. I mean that should be the conversation we're having you know, um, an allowance for things like sensory or fidget toys and with permission to know. So I know I've had that question a few times like how do you do it for the whole classroom? Um, but you can do it. You normalize it from the beginning, so it's not something that's others or different about the student using a fidget sitting at their desk and that kind of allowance as well for the visual guides knowing what to expect If there's a school tour coming up, having a visual guide ready for the person, knowing what they're allowed to do and what they're not allowed to do and being explicit about those things.
Speaker 2:And things like personal experiences are respected over one size fits all rules. You know, I love to hear that from the teachers or the SNAs that are working directly with our kids. You know that are able to say, oh, he doesn't really like his school jumper, so he decided he was going to wear his PE top for the school year and that was not even considered as something that was a special request, it was just that's no problem, you know, and instead of having a parent go to an OT and have to get a letter to explain all of these, like there's an element of universal design in the school rules that we should be able to implement. And when you hear things like that that are more inclusive, that are accommodating, without having to have all of the format of or the formality, should I say, of implementing the school rules around how they can engage and how they can be part of the school community.
Speaker 2:I think is is really lovely to see um. Another one that's brilliant actually was something that we used um my own son was live transcription on slides so that you have the extra subtitle backing up the communication environment and that you're not just focusing on the person talking in front of you because of processing differences and you know, I absolutely love that and I'm not sure why it's not used more universally um. So yeah, they're just some kind of examples um, but that sensory language that we have should really be more um acknowledged, you know, and when you see it being um acknowledged in the classroom, it's really lovely.
Speaker 1:So I've seen some really good examples of that and then you kind of you, you sort of hinted at it there in terms of sort of the misunderstanding of UDL and how that can present challenges. And I know from my own perspective as someone who is autistic and has ADHD, oftentimes I will go to something that is, you know, considered autism friendly by design and it just means that it's really quiet and everything is beige and my ADHD then, just like, needs that sensory information. But someone has thought well, this will suit everyone who's autistic and I think that's where UDL can maybe be slightly misused, would you think.
Speaker 2:I think that's where UDL can maybe be slightly misused, would you think I think so. I mean, if you think about it, there's so much superficial sort of implementation and it's sometimes it's based on very surface level understanding of UDL and someone who hasn't actually connected with the person that they're trying to support. It's more about, well, someone prescribed UDL to me. This is our best practice and this is how it should be. But you really have to make sure you're not overlooking individual needs when you're implementing these things, and you know there's so many different ways that we can actually misuse it.
Speaker 2:There's plenty of pitfalls that you'll see and then sometimes, when it's having discussion with a management or you know, and talking about how we provide these supports, it's kind of not really what are we trying to say? So, for instance, if a teacher provides a range of materials but kind of neglects to accommodate a student specific learning disability for instance that student may still struggle despite the UDL framework being in place. So there has to be very specific needs included within how we provide this accommodation and how we use our lesson plans and how we set up the environment to make sure that we can um foster that participation and um just engagement across the entire day. You know, um, but there is a huge amount of misuse because of the lack of awareness of what exactly udl is and the assumption that it is just giving some choice in the day and that's it. You know so it's. There's more to it. It's it's really understanding how it works in practice and having good examples of what those things are.
Speaker 1:That makes an awful lot of sense. And then you mentioned earlier that's one of my favorite things to hear the idea of the, the autistic student being the, the expert really, and that notice to be people being the experts in their experience. And so are there ways that people can include the student voice and how they kind of implement udl?
Speaker 2:absolutely. Um. So student voice is essential in udl. There's no two ways about it. You have to be able to listen to what your students need, and for autistic students it's a lot more difficult to speak up. And so, in order to have that autistic lens over your UDL provision and how you're setting up the classroom, it's really about tuning in, so using things like a neurodiversity student council, for instance, having that reference to the lived experience always in everything that you do, that you're not just kind of overlooking things and assuming you know what's best.
Speaker 2:It's really about conducting things like a one-to-one interview, you know, and thinking of it like that, and opening up the conversation in a format that works for them. It could be using a voice note system on your WhatsApp, or it could be recording a video clip that they send in an email, rather than that in-person interaction, because that can be the barrier sometimes for actually expressing what our needs are and opening up the different modes of communication so we can kind of tailor it accordingly. There's like representation again, so being able to contribute feedback in a way that they need to. So if something's not working for them, how can they self-advocate, how can they say look, this didn't fit with my needs. How can I show you that I know that I've learned this stuff and prove to you that I actually do care about the things that I'm doing? Because very often it's assumed the person doesn't care're lazy, or they just, you know, they're not organized enough to do this. And I'm speaking from the ADHD side of things with this and also from an autistic lens, where it's difficult to get started with projects or then to let go of the project when you've been so invested in it for so long.
Speaker 2:So those kind of transitional pieces and having a good understanding that sometimes the project needs to go on a little bit longer because we've developed a special interest and maybe it could be carried across a number of weeks rather than just a one week thing, you know, because it's respecting the individual's autonomy to have control over their own learning, have control over their own learning, and it really does open up all of those kind of cognitive engagement pieces for the autistic person, like that tendril theory, where you're all of a sudden completely invested in your special interest and then someone tells you no, sorry, we've moved on from this, and it's really difficult to pull yourself back from it and just to let go um.
Speaker 2:I think an awareness of, of the passion and the intrinsic motivation of the autistic person is really relevant in that student voice. Um, when we tell you we're really enjoying our learning, believe it and use that as a motivator and a pathway to help us build on it. You know so these are kind of cues for teachers and parents as well. You know to, to carry on the conversation for learning and engagement and participation.
Speaker 1:Um as you say, I actually had a visceral reaction to the idea of of stopping, uh doing something when you're so focused in it that that idea of being pulled in it's even just thinking about it. There's a physical sensation to it. Isn't there like it's it makes. It has such an impact on the individual and I think it's so hard to appreciate that if you're external to it. It brought back a particular essay on the children of a leaguer that I had completely forgotten about, but I remember being devastated that I couldn't keep writing it because I just loved being in that world so much how interesting I particularly felt it with history and I also had a thing for languages.
Speaker 2:So Spanish for me was my all-time special interest, like I loved learning it, um, and I loved using it, you know, with people, even though they didn't really know Spanish, I'd still tell you about it, I'd still start talking in Spanish and it's like someone had pressed that button on the remote to transfer into Spanish, you know, and you couldn't kind of switch it off. You just become that personality. But I used to love Spanish and I loved the teacher, particularly because she facilitated that special interest and that um grow for learning, you know, and she didn't um think about the switch off. So when you move from her as the teacher and you're on to another teacher and they mightn't have the same passion, that can be difficult. You know that transitional to another person because you've felt safe with that person, with learning and the psychological safety of that as well. If you have to pull back and start behaving in a different way because it's not the same way this person communicates, I think from the autistic lens that is really tough, you know, and the transfer from one person to another and the feelings of psychological safety that can come with that, but UDL does help us scaffold, that you know, and if we can bring it back to those guidelines.
Speaker 2:Every time in the conversations that we have and our temporal learning environment, constantly, and how to self-advocate, in those moments we're like I don't know you. Can you tell me a little bit about you? What's your background, what are your special interests? You know, can I trust you? And these are some of the questions that we don't get to ask our teachers, you know, can I trust you? And these are some of the questions that we don't get to ask our teachers, you know and therefore we're closed off and not able to be ourselves and we're masking because we're trying to behave and trying to do the things that are expected of us rather than learn, you know, and that is a massive barrier and I don't think it's just me that feels that way.
Speaker 1:Certainly not. I think that word, that word safety that you said is so, so key to understanding it, isn't it? Because I think a lot of teachers would be devastated at the thought of a child feeling unsafe and would do everything that they could, everything that they could, and I think if it almost reframing it as needing to feel safe can make a big difference in terms of how people kind of understand and sort of conceptualize what that experience is. But yeah, no, it's, it's massive, it really is. Are there, then, sort of first steps Again, maybe this is a really difficult question to ask Are there first steps that someone can take if they're wanting to sort of start implementing and exploring the idea of and so education, obviously, is going to be your first step.
Speaker 2:You need to understand what exactly this is, this framework, this guidance that we're implementing across the board, and think about what it looks like in your whole life, not even just in the classroom environment, because you know our communities should be universally designed, but unfortunately they're not. And in my role within, as I am, I'm the training and accreditation manager, so I'm constantly kind of doing these sensory accessibility audits, looking for cues of safety versus cues of comfort, you know, and thinking about our central nervous system and how it's completely entwined in our environment and all of the things that happen in that space. And that's not just in the classroom, it's literally the whole school, it's out in the community, it's in your own home, it's. You know you need to be able to gauge how to participate and get through your day and live with intent and not just by other people's means.
Speaker 2:And for, I think, autistic people you can often get to later in life and realize I actually don't know what my favorite flavor of ice cream is, because you've just been completely masking the entire time. And if someone says I like mint chocolate chip, okay, so do I. You know that's what I like, because you know it's going to be well received and it's helping the person tune into their own identity. I may have gone off topic a little bit, have I?
Speaker 1:No, that is gorgeous.
Speaker 2:So I think, helping our young autistic students self-identify and lean into that not even as an autistic student, identify and lean into that, not even as an autistic student we don't even have to name autism in this conversation just as their own identification of who they are as a human. You know, what are their strengths, what are their challenges, what are their strategies throughout their day, what helps them kind of, and help them know themselves, because I think a lot of us don't know ourselves for a really long time until someone holds up a mirror and says you're really great at this, you know, but sometimes you can be just going under the radar for a really long time and no one realizes that you aren't actually engaged. You know in all of this You're just going through the motions and that's not facilitating learning. That's facilitating a conveyor belt mentality. You know, and at the end of it, what have you learned? Can you remember the things that you were supposed to be learning? Probably not, because you're so focused on the threats in the environment. So I think our first steps are going to be education for anyone that's supporting a young person through their educational journey and that would look like workshops, webinars, reading just read as much as you can on the topic. There's so much great content out there now in the space um, opening up the conversation, so consulting with autistic students, um, or autistic colleagues. You yourself might be autistic, so you're tuning into your own needs. What does that look like in the classroom? Bring it into it, you know, and what works well for you might work well for everybody in the room, having kind of flexible workstations.
Speaker 2:Sometimes it's like piloting a quiet space in the classroom or a quiet space near the classroom, so away from everybody. The focus sometimes is on a sensory room and that this is all we need to be autism friendly. And unfortunately it can do the opposite, because if you're overstimulated and your SNA brings you into a room with flashing lights and vibrating walls, it's just adding to the stress load, so you're not actually able to regulate yourself. So it's important that we know our young people really well and to have conversations with anyone that's supporting that young person. So it could be a sibling as well. We don't often think of the siblings in the school environment as well, like we don't often think of the siblings in the school environment. I know for my own children. I have three. They brought my son's siblings to him when he was feeling dysregulated, and it helps him just to have that safety cue, you know, and have someone beside him that knew his needs, that could talk to him in a way that was familiar, and that familiarity is really important.
Speaker 2:So I suppose autism awareness, but also acceptance and being able to really engage in the learnings about UDL and all of the things that go with that, so not just a very kind of vague introduction to it or a surface level introduction. It needs to be um focused and learning with intent, um fostering discussions as well. So thinking about different thinking styles and learning styles and that is all involved in the education around the topic itself. Um, but just, yeah, a little bit of thinking outside the box and thinking how we can link in with the autistic community and the neurodivergent beyond the autistic community. So people that have um dyspraxia or adhd and you know, whatever it might be, it doesn't matter, it could be physical learning differences as well, so it's all encompassing really brilliant. Um. I think I went on a tangent that was beautiful.
Speaker 1:You did not. It was for emily. In fairness, two autistic people talking to each other is always going to be tangents, very fair, perfect. Well, I actually would love them to ask you a little bit about yourself and sort of what has brought you on the journey towards sort of working in the, the amazing work that you do, or in sort of providing that support oh my gosh, um, where to begin?
Speaker 2:so, I suppose, for me, I suppose my son's identification of being artistic that was in 2008, um, and it really highlighted highlighted my differences within that, and I've met so many um autistic adults since that have had the same experience where, through their own child's diagnosis, they kind of pick up on their own different um experiences throughout life and kind of answers a lot of questions in terms of why didn't I fit in here? Why did I feel really lonely in this situation? You know, why was I so anxious about going to that party? Or, you know, answering that phone or answering the doorbell, you know all of those things that can be massive for the autistic person just to be able to be, know, to exist. So I think what brought me to working with all of this is that kind of sense of social justice, and I can't switch it off, unfortunately, um, but it's probably a good thing that I am, uh, so kind of conscious of that social injustice for the autistic person. I think as a parent, I have fought tooth and nail, like many other parents throughout the education system, and we've come out the other side to adult services now, which is a whole different form of advocacy, but ultimately it's fighting for the same thing, um, and it's fighting for that understanding piece as well. So you're you're still kind of firefighting throughout the day and you think, oh, it's fighting for the same thing and it's fighting for that understanding piece as well. So you're still kind of firefighting throughout the day and you think, oh, it's going to get better when they get older and all of that. But unfortunately, at every stage there has been a need to advocate and it just fuels my fire. I think it makes me just want to see that equity and equality and that value placed on neurodivergent people.
Speaker 2:I love to see my son getting his voice heard, you know so, when he's set up in a way to advocate for himself, and there is, you know, the communication barrier there for him. So he would have been non-speaking up until around the age of eight or nine. Lots of echolalia and all of that. But navigating that with him has taught me so much. And then I had actually set up my ADHD and set up my own community groups for him to support his social connections, know, because there was nothing that was autism friendly at the time, um.
Speaker 2:And in 2014, I set up sparkability um in our local community and it's just been such a love, uh, just to be able to connect with other families that are in similar situations, that just want you know the ones that can't access the GAA club because it's too noisy or that there's too much social interaction, there's no quiet spaces, there's no communication around what's expected of you within the environment, or you know all of the predictability that goes with being structured environment, and I just found this fascinating that people didn't really do this. Naturally, you know that other people just picked up on this, um, and it's something that I don't think we well in my house anyway, and I know a lot of other people struggle with it but that social osmosis piece where you cannot pick up on what's expected of you, you need someone to explicitly just say you know you're coming in here, this is what's about to happen and this is what we need you to do, and it's one of the most basic asks, but it's. We often forget that this is a need, you know, and it is a support need, but not just for autistic people, like it could be an elderly person not knowing what they need going into a shopping centre where to find a trolley. You know all of those that the way finding aspect of the environment, but it's, I suppose it's really ultimately about promoting that systemic change. That's all I really care about, and also my son's needs and my own needs and recognizing what those things are. But that really just kind of fuels my fire to make sure that other people can find the things they need in order to facilitate that learning and facilitate that um, that love of life.
Speaker 2:You know, not everyone can have that um, because there's so many barriers and it's it's the unfairness, um, like we should all be able to play. You know, we should all be able to spend time on our special interests. We should all be able to spend time on our special interests. We should all be able to sit with the family on our birthdays, even though we find it really difficult because everyone's singing happy birthday and then, you know, trying to tell them you know, please stop singing, or and just having those moments where you can just speak up for yourself, you know, and I think that's so powerful if we can just say what we need. But we're often not facilitated to do that. So I suppose that's one of the main reasons.
Speaker 1:Amazing, that's incredible. What a fantastic journey. Aren't we lucky that you're there doing it as well? The difference that you're making and this is a really difficult question now I know, but is there something that you've learned, either from yourself, your son or from all of the the amazing autistic folk that you've worked with, that you wish everyone knew?
Speaker 2:um, I think I've been so, so fortunate to work so closely with so many autistic children particularly, but also adults, and over the years they've taught me some truly invaluable lessons and they've also taught me about myself, you know, in so many different ways and if I suppose, if there's one thing I wish, it's just how profoundly unique and gifted and resilient the autistic community are. Um, I think we're often seen through that deficit-based lens and it's just not accurate. Um, I would love people to stop focusing on the impairments and the challenges and the, the things that we find difficult um and that you know, stop comparing us to the neurotypicalpical mold, because it is debilitating and what's causing the disability for very many of us for so long. But I suppose my interactions is understanding that our differences really are incredible strengths in so many ways. Incredible strengths in so many ways um, the intense focus, the heightened kind of sensory awareness, the outside the box thinking. You know there's um so many qualities that allow the world to understand us in a more kind of innovative and beautiful way. You know there's so many things that we do that should be promoted and talked about and instead all we hear is, you know, the news article about the difficulty getting a child place, or we hear terms like challenging behavior or all of the things that are very triggering for a lot of autistic people.
Speaker 2:Um, and I suppose I've just been in awe of the resilience, so the amount of kind of barriers that are in our way and we still kind of excel in different areas like art and music, and you know maths or whatever it might be your area of gras.
Speaker 2:You know that you're just able to focus in, on, in on um and those creative abilities and the ability to kind of problem solve. You know um and to understand that you know not everyone is going to know how to accommodate you, but they go ahead and and engage in whatever it is anyway, in spite of all of the difficulties. Um, but I suppose if the rest of the world could see what I see like, like the boundless kind of creativity, the uncompromising authenticity you know, and just allow us to unmask and just be able to bring that quiet strength that can kind of radiate within the artistic community, I'd love to just see everybody just promote their acceptance, you know, and be welcoming. You know and truly believe that by uplifting and celebrating autistic voices that we can stand again immeasurably, you know from all of the different elements of life 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 meddletown center. If you'd like to know more about meddletown, you can find us on x at autism center and facebook and instagram at meddletown center for autism. Go easy until next time.