Non and Minimally Speaking Autistic People with Léon Van Omen, Katy Unwin and Lucille Kennedy

In this episode, Krysia speaks with Léon van Ommen, Katy Unwin, and Lucille Kennedy about their project on non and minimally speaking autistic people.

The transcript of the episode is available here: https://share.transistor.fm/s/2d4187f9/transcript.txt

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This podcast is brought to you by The University of Aberdeen's Centre for Autism and Theology.

Website: http://www.abdn.ac.uk/sdhp/cat

The artwork for this podcast uses the Centre for Autism and Theology Logo, created by Holly Russell.

Creators and Guests

Host

Krysia Waldock

Autistic PhDer: autism, belonging & religion. Assistant lecturer in RS @relstudieskent. Research assistant @UniKentCyberSec. Own views. she/they ;

What is Autism and Theology Podcast?

The Autism and Theology Podcast is a space where we engage with the latest conversations in the field of autism and theology, share relevant resources, and promote ways in which both faith and non-faith communities can enable autistic people to flourish.

Our episodes are released on the first Wednesday of every month. We have a variety of guests who are related in some way to the field of autism and theology. Some are academics, others are people with life stories to share, and some are both!

We also release CATChat every third Wednesday of the month. These are shorter and more informal episodes where your hosts will share news and give you as listeners an opportunity to ask questions and share your stories.

Krysia
Hello and welcome to this episode of the Autism and Theology Podcast. I'm Krysia and it's great that you've joined us this week. This podcast is a space where we engage with the latest conversations in the field of autism and theology, sharing relevant resources and promoting ways that help both faith and non-faith communities enable autistic people to flourish.
If you'd like to access the transcript for this episode, it can be found in the link in the show notes. And on today's episode, I have three fantastic guests with me to share some of the work that they have done with autistic people who are non-speakers and minimally speaking.
We have our lovely CAC director, Leon Van Omen. We have Katy Unwin and Lucille Kennedy. So hello everybody. I wonder if I wonder if each of you can tell us a bit about yourself, maybe starting with Leon for people who don't tune into the podcast very often, and maybe don't know you.

Lucille
Hi.

Katy
Hi, Krysia.

Leon
Hello

Leon
Sure. My name is Leon, as Krysia already said. I work at the University of Aberdeen. I'm A practical theologian, and I also have the privilege of co-directing the Centre for Autism and Theology.

Krysia
And Katy, I wonder if you could tell us a bit about you.

Katy
Thanks so much Krysia. Yes, so my name is Katy and I'm a lecturer in the School of Psychology here at La Trobe University in Melbourne. And I've been working with Leon for a long while on a bunch of different projects, but now I also have the pleasure of working with Lou.

Krysia
Okay. And Lou, I wonder if you could tell us a bit about yourself, anyone who doesn't know you and what you do.

Lucille
Hi, thanks Krysia. Yeah, yeah, I work for L’Arche UK, which is a charity which builds community with adults with learning disabilities. I'm a mum and a grandmum and for the past eight months I've been working with Katy and Leon on this project.

Krysia
Super, and I wonder, and Katy might be a good person to tell us a bit about this.
how you came to do this piece of fantastic work.

Katy
Oh, thanks. I mean, it's actually been quite a long while coming, I think, for all of us in a way. So Leon and I had a discussion a long while ago about how much we noticed that non-speaking and men and verbal autistic people were just being excluded from research. And we ended up digging into it because a kind of grant application came up that seemed to be right. And it was really staggering what we found. So there were these figures that were coming out of the research. So we think in the field of autism research that about 30% of the population are actually non-minimally speaking, but only 2% of studies seem to be on this sample. So we're finding a real gap, I suppose, in the literature. But almost more importantly than that, what we've realised, I think I certainly have realised it across the years in autism research has been that because we just are not including these participants in our studies, we have whole groups of voices completely missing. So we just don't understand what it's like to live as someone who's a non-speaking or minimally verbal autistic person.
And being personally speaking, when I did my PhD, I included a lot of people within the sample who were non-speaking, minimally verbal. And what was fascinating was that I often found people who were highly communicative, who were, you know, fascinating and challenged me.
and who were such wonderful, wonderful people. And yet I was just so aware that they weren't included in research. And so that was really the genesis of where this all came from for us.

Krysia
And was there anything, Leon, that you think extra in addition to Katy?

Leon
Katy sums it up really well. I think it's a population that is so much overlooked, both in research and in autism studies in general. So I'm even not talking about theology, but just in general. And then in church very often as well. It's often, especially when people don't speak, we don't know how to communicate with them, and, therefore...
People get excluded very quickly, not necessarily intentionally, but that is the social dynamic that very soon happens. And we were just so curious and so passionate to include these people, a group of people and learn from them. And I'm sure that Louis will tell us stories like, you know, this is not just us doing something good.
This is like, no, here are people created in the image of God and they express something of God. And if we don't listen to them, then we are missing out, folks. So that's, yeah, that'd be kind of a theological or spiritual reason to do this research as well.

Krysia
Yeah, definitely. And I'd wondered, Katy and Leon and Lou, you can chip in if you had anything extra on this, but don't feel obliged. What kind of your main, what do you, what you found from this project? What, what, what did you do? What did you find?

Katy
I'll hop in with what we did and then someone else can take what we found. I think what you'll find Krysia is we can't, we probably can't tell you what we found in totality because we found so much, but we will give you a taster if you will. So yeah, so we started off this project with a full literature review and we basically came up with
a whole range of ways that we could engage this sample in our study. But funnily enough, obviously, no single method was used. You will hear from Lou about a range of ways that she engaged with each individual person, meeting them where they were at.
and engaging with them in a way that was meaningful for them.
And so following that literature review and deciding that really we could have, we couldn't just have one method, we needed a bunch of methods. That was when Alu came in and met with a range of people across different large communities.
Lou, maybe you want to tell us a bit about, yeah, the number of people you met with and generally what you tried to do with each person broadly.

Lucille
Yeah, yeah, I met with nine people together and the idea was that I was alongside them while they were part of some kind of spiritual, like the worship session or doing something that they consider spiritual themselves. I also did a talking mats interview with each person, which involves using symbols rather than words. And quite often, yeah, with most people, we were engaged in some kind of creative activity as well, because I was aware that for most of the people I met with, that they communicated using creative methods. So whether that was collage or writing poetry or singing or...
Yeah, there were various, yeah, producing artwork, various different ways that people were communicating creatively. So I thought that was really important that we listened to that as well and brought that into the into the project.

Leon
Yeah, absolutely. And yeah, what did we find? Maybe it's almost like, it's very unsurprising in a way, but it needs to be said. What we found was these people had such rich spiritual lives and that really didn't depend on the ability to use spoken language. In fact, this one, I guess, kind of almost a fun fact about the research. What we found was that spoken language can actually be a hindrance. So we, for example, and maybe Louis, you can tell a story better than I, but just I'll start and you can fill in. Lou accompanied 1 participant to church and that person was just completely kind of immersed in that environment, just the sensory environment, the atmosphere, really enjoying it. And you could just see that something was going on there for that person. They enjoyed the liturgy in so far we can tell. But when it came to the sermon, that was just, that took way too long. And it was the spoken word there that actually was like almost interrupting that sensory experience. Lou, am I representing that story correctly?

Lucille
Yeah, yeah, yeah, yeah. Yeah, we saw with other people and the sensitivity of the person supporting them, not to interrupt them with spoken language as well, and to do things very unobtrusively around them during a time that they were in church.

Krysia
And almost in a way, this might... Follow on to another kind of thing I was really interested in was, was there anything particularly enriching or particularly surprising you found and you experienced while doing the work? And I wonder, Lou, as you're the person who followed people around and watched people, if you might be best placed to
to answer.

Lucille
Yeah, yeah, it was very enriching Krysia. I'd say that it strengthens, it strengthened my own faith being part of this project and being around people who experience God very differently than I do and who express their faith and their spirituality very differently. I saw, yeah, a completely different face of God. And yeah, I feel changed by the experience. I feel my spirituality has been changed by the experience. And that brings me a lot of joy, actually. I feel I'm in a different place for having been alongside these people.

Krysia
And Katy, did you want to add in at this point?

Katy
Only that I didn't even meet these people in person, right? I saw videos of them, I saw transcripts of them, I saw the artwork they created and I, in the same way as Lim and completely changed by having encountered them. And my own faith has been strengthened through it. And I also have seen another face of God through it.
It's something I can't really explain and I struggle with that being my background being in science and psychology. But yeah, I just, there was something different about these people, about hearing their way of communicating, about seeing how they communicate and what that means about God.
And the funny thing for me was that Leon and I, when we were first planning out what this project could look like, we'd sort of talked about that in a really sort of like theoretical sense, like, well, you know, we know that the, you know, the spirit intercedes for us with wordless groans. We know that, you know, God doesn't need language. So

Lucille
Yeah.

Katy
you know, surely something must be going on here. And it was always that very academic level. And it was only actually meeting these people through transcripts, through videos, through audio recordings, that I just found that to be completely true. And it really surprised me.

Krysia
Was there anything, Leon, that particularly, I guess, surprised you or you found particularly enriching as well?

Leon
Yeah, I would follow on from what Lou and Katy said, because so in kind of more research terms, analytical terms, we called this reciprocity. So rather than support workers supporting someone to go to church or to a choir or to some kind of prayer meeting or whatever, I mean, that sounds very one-directional. These people need a support worker in order to be enabled in their spirituality. But actually, what we heard time and again from Lou itself, but also from support workers was, I remember one said, and that really touched me almost, it's like, It's such a privilege to be with, you know, the person they supported. We're not going to name names here, but...
And that reciprocity. So it is by spending time with people that you're being enriched yourself. And it's, yeah, I don't know whether it is necessarily surprising, but it is, it was that kind of deepening aspect to the research that really I guess gave that joy to the project, as Lou said. There is something profound going on that you will not discover if you just study this at a theoretical level, that you will only discover or kind of be enriched by when you're spending time with people and be open to receive from people. And that is that, I mean, that's true for researchers. I would say that's true for churches as well, but maybe now I'm getting ahead of ourselves here, but.

Krysia
I understand you have been developing a talking mats resource and I wondered if you could tell us a bit about it, but also I guess it's already implicit in our conversation just why it's so important to have this resource.

Leon
Yeah, that's great. Thanks, Krysia. Yes, so talking maths, as Lou already said very briefly, is a communication system as it were, and it's based on symbols. And basically what you have, you have literally you have a mat and you put it on the table or you put it on your lap or whatever. and you've got like a top scale thumbs up, thumbs down, and something in the middle. And you can use that for things are going well, not so well, or don't know, or need support with, don't need support with. So you can make that top scale do whatever you want to do. And then you have, say, per topic, you have, say anywhere between 10 and 20 symbols, usually. You hand that to the person that you were having that conversation with. And so you ask them to place it anywhere on the mat according to, well, thumbs up, thumbs down, or somewhere in the middle. And in that way, you empower them to express their own views, their own thoughts, their own feelings. And so, that's one thing that we used in this in this in this project, and because so we developed a resource with Talking Mats, so it's now an official Talking Mats resource as well around spirituality with four kind of topics underneath it, and so that just... It's not an exhaustive resource by no means, because, you know, we hope that people from any spiritual tradition or religion can use it. So obviously we can't cover everything and have a symbol for everything possible. But it's that starting that conversation. And why is that important if someone can't express themselves by words and how can people express themselves? And as Lou already has commented, like there's, and Katy as well in her research, people have a multiple way of communicating, but that is not necessarily communication that you can easily pick up if you don't know the person. And so this is a tool that's quite obvious what it means. Like, okay, here's the symbol for prayer. Okay, it's pretty obvious this means prayer. And so you can have that conversation, right? Yeah, that's the Talking Matt spirituality resource. And if you allow me an unashamed plug for the resource, on May 7th, we will have an official launch for that.
For the resource for the tool.

Krysia
That's super. And I guess as we come towards the end of our conversation, it might be good to hear about what your hopes for the future of the work alongside and with non and minimally speaking autistic people is. And I wonder if Katy, you could start off.

Katy
Yeah, sure. I suppose our hopes are pretty, pretty huge. The first thing is that we hope that people will actually just start engaging in this way a little bit more. So we're not just talking about more research, getting on board, finding inclusive practices, but we're talking about people, any people in any community,
starting to find ways to engage with people who are not and minimally speaking. And I guess what I suppose we want to encourage people with from our work was that there is no foolproof, fancy way of making this kind of experience happen. There's no real way to specifically engage someone who is mononymously speaking. There's no secret handshake or anything. It's actually far more simple than that. What we found in the research was that it's two things. Firstly, it's just being with.
So there were so many examples of wonderful people in the research that just were there, were just present with the people who are non-minually speaking, and that meant something to them. And that was a way of building rapport. And for those of us who use words to communicate more, freely with different people, sitting silently beside someone feels wrong. It just feels inappropriate. But actually, you need to push through that, it seems. There's this sense where like that is a way of forming connection. So that was the first thing we found. And the second thing we found was there was this marvellous woman who after the church service had come up to one of the non speaking people in this English congregation and she handed him some some bottle caps. And when I when I read about this in the research transcript, I just said to Lou like, what on earth is going on? Why is she handing her rubbish to this guy? Well, it wasn't to him. Bottle tops were what he loved to engage with. He made these gorgeous figures out of them. He managed to take them together in particular formations, and they had real structure and integrity. And what's important is that they were really important to him. So what we saw there in this service is this
wonderful woman during her week, collecting bottle caps whenever she found them and handing them to this gent after the service as a way to build a connection with him. It was so simple, but his face just lit up with joy. And even to this day, I feel almost giddy talking about it because it was such a beautiful thing to see. So
What we hope for the future is that people will realise there's nothing fancy to do here. All we're asking is that people just go and be with. If you can find some way of specific connection with a specific person, please go ahead and do that and use that. But more than anything, the more people that start thinking about this and talking about this, we hope the more people will actually just start engaging more with those who are non-speaking and verbal as they form such an important part of our communities.

Krysia
Definitely.

Katy
Lou, Leon. What else? What have I missed?

Leon
No, you didn't miss anything. I think that was just absolutely beautiful. And yeah, you really covered it.

Lucille
Yeah.

Leon
Well, maybe add one thing. I, and just seeing this aligns very well with the vision that we have with the Centre for Autism and Theology as well. We really want to support people in their faith journeys, but also it's not just about those individuals who are autistic or have other neurodivergences or other disabilities. It is also about faith
communities around them. And those two are really one, if that makes any sense. So it is about, you know, when the autistic people in your communities are thriving, you as a community thrive as well. If you as a community thrive, you've got something to give and to receive.
from an autistic person as well. So those two always go together. And I just love how this project worked out in that way, I think. And we just want to call on the church, just as Katy said already, just find ways of being with these people. You don't need more resources. You don't need more language. You've got everything that is there and that is simply you and the love of God. Lou, I don't know whether you want to add anything to that.

Lucille
Um... in terms of what we found? I think something that we haven't covered are the barriers that people face in even getting to a church service or to some kind of great worship. And yeah, one of the things that really struck me was, yeah, the persistence and how important it must be to people because of, you know, for people with proprioceptive and balance issues, for instance, just, you know, getting into a building could have been, can be really difficult and the kind of, yeah, so it just really struck me how important it must be to people to be part of things and to be, to express their spirituality, to overcome so many things.

Krysia
Yeah.

Lucille
For some people just even leaving the bedroom was difficult. And yet it was important for him to visit his father's grave and to sit in church.
Yes, I think that was an important thing that came out of the work we did.

Krysia
Yeah. Definitely. And I think what really strikes me in the conversation with the three of you is just how simple a lot of these ways forward are. So it's not, as Leon said, about buying, getting fancy checklists or having loads of money for resources. It's just about relationships at the key and at the centre of it. And I think I'm just so, I guess as an autistic person myself, although obviously I'm talking right now, there are times at acute stress where my speech really does struggle. And the fact that this
work is being done, I just find so helpful because obviously sometimes I find church to be a centre of stress. So we do need to be able to have to kind of find out what does make people flourish. And the fact it's relationships actually for me is just so great because it means we haven't got to be chucking money at people or doing anything fancy. It's just going back to basics and relationships. And I guess in the way that kind of comes on to the last question I was going to ask. And I'll start with you, Leon, and then Katy. And if Lou, if you want to come in, that's absolutely fine. I guess what's 1 takeaway that you'd like our listeners to take from our conversation today?

Leon
I'm just going to repeat what I just said. Find ways to be with these individuals. You don't need resources, you don't need more language. Just be with people.

Katy
I think that's really it. Yeah, I think that's really it. And, you know, the reason why we why we do this is because of the God we know. And let's all just be honest here, this is not surprising that we're finding that relationships is the key thing, right? Because we know that God before the beginning of time was in relationship.

Krysia
Yeah.

Katy
with the Son and the Holy Spirit. And so, you know, in some ways, we're trying, we feel in some ways like we're doing something groundbreaking here. And in other ways, we're doing the simplest thing that's ever been known to man, which is to be in relationship. So that's just what we want to encourage everyone with.

Krysia
Yeah.

Lucille
Yeah, yeah, for me, for my answer to this one, I've written down, stop talking. Yeah, my experience, you know, particularly in the social times after services, was such a lot of talking going on. And yeah, just, do we just need to stop talking, be alongside each other, and value, really value being with someone who maybe doesn't use speech. Just be with them and go with it and see what happens, you know.

Krysia
Well, thank you so much, the three of you, for joining us today on the Autism Theology podcast. It's been a delight and I hope you've enjoyed having a conversation with one of the hosts. And thank you to our listeners for joining this episode as well. If you have any questions, you can message us at Autism Theology on Blue Sky or on Instagram.or you can send us an e-mail at cat@ abdn.ac.uk. And even if it's just to say hi, we would love to hear from you.