Ian: Hello, and welcome to this episode of the Autism and Theology Podcast. I'm Ian, and I'm so glad 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 faith and non-faith communities enable autistic people to flourish.
This podcast is run from the University of Aberdeen's Centre for Autism and Theology, which we've shortened to CAT. If you would like to access the transcript for this episode, it can be found via the link in the show notes.
Today, we have with us Dr. Sheila Akomiah. who is a research fellow in the School of Divinity, History, Philosophy, and Art History at the University of Aberdeen. Sheila is currently working with Dr. Léon van Ommen—the principal investigator—of the Center for Autism and Theology on the AHRC-funded project, Access Denied, Spirituality at the Intersections of Autism, Ethnic Minority, and Non-Speaking Autism. In addition to her current role at Aberdeen, Sheila also lectures in African theology at the Church Mission Society in Oxford, and serves as a presbyter in an African Pentecostal church in Glasgow. Sheila, thank you so much for being with us today.
Sheila: Thank you so much for inviting me.
Ian: Sheila, to start out with, would you mind telling our listeners, if they're not familiar with your project, just a little bit about the scope of it, what it was that you and Leon were up to?
Sheila: Okay, yeah, so as you, you know, alluded to in the introduction, um, the Access Denied Project, was an AHRC sponsored research project in partnership with the Centre for Autism and Theology, with Dr. Léon van Ommen leading as a principal investigator, and myself coming on to assist with that research. And the main aim of the research was to explore, and try to understand the spiritual lives and the spiritual experiences of two unique groups of autistic individuals. So, on one hand, non-speaking autistic individuals, and on the other hand, Black autistic adult individuals, with the UK as the context of the research.
And then apart from trying to learn about their spiritual experiences, we also wanted to also capture the ideas, the theological views, of their spiritual or religious communities. And in this instance, Christianity was the focus when I say spirituality and religion, yeah. So, to understand their religious or their Christian communities in terms of the views that those communities they were embedded in also had about autism, either socially, educationally, or even theologically. And to see how, you know, that concoction, so the experiences of the autistic individuals themselves, and the views of their communities, how all of that either hindered, or enabled their spiritual and religious flourishing. Thus the name Access Denied. So, access denied or access granted. And then, yeah, yeah, we came up with what's our results said about that, that theme. Yeah.
Ian: Yeah, so… so your half of this, or the part that you primarily dealt with, was looking at the experience of Black autistic adult Christians. Do you mind saying a little bit about how you went about that aspect of research? How you went about gathering that pool, and what you, um, what your methodology was in terms of gathering data?
Sheila: Yes. Yes, so a hugely important aspect of this research was all about centering autistic voices. So, in all we did, our main aim was to make sure that autistic individuals were speaking for themselves as much as possible. So, when it came to the part I am focused much more on in terms of research activity, dealing with the Black autistic adult community. In terms of methodology, then we decided to do in-depth interviews. So, initially, we had aimed for at least 20, you know, getting in contact with, you know, Black autistic adults in the UK from all over. In the UK, England, just all over geographically. And, you know, doing in-depth interviews with them to explore their views. However, we managed to, um, with great difficulty, we managed to get 10 individuals to speak to, which, um, we were still really, really grateful for their views. There were so many challenges, when it came to trying to get in touch with and engage with this community. One of them would be that, even in terms of representation in church spaces, we see that Black autistic adults, that I can talk from experience myself coming from a Black Pentecostal church background, you know, Black autistic adults are almost invisible and almost absent, seemingly in these community spaces. But we do know that they exist. They are there, and they are part of the population. So why do we not see them, or where are they?
And it's based on, you know, that background that also actually came out in our research, and we try to contact people that it's actually hard to find people from these communities to speak to. But yeah, as I said, we were successful in speaking and engaging with 10 individuals in in-depth interviews, and they were, you know, came across, like, both genders, not just, um, women, but women and men as well.
Then the other aspect of the research, which I said in the beginning about learning about the communities in which they worshipped and lived their religious lives. It was also important that we engage with Black church communities. So in this instance, we decided to engage with Black church leaders. And we were able to interact with 31 of them in an open-ended survey.
And then, you know, with the views of the Black autistic adults themselves and their voices, and then the views of their church leaders. We then, yeah, analyzed the data and came up at the end with some themes that came up from what they had shared with us, yeah. So that's how, yeah, we went about that aspect of that research.
Ian: Yeah, I can… and I can imagine that difficulty. I was late diagnosed myself, so I didn't find out I was autistic until I was 41, right? I think I was 41. But anyway, and it was, in some ways easier for me, because there are a lot of providers in the States, there's a lot of, there's a lot more awareness in my community, than there are in some communities. There's, there's less of a barrier to diagnosis in some aspects. So I can imagine. difficulty in finding adult autistics in some communities, especially if there are barriers, you know, autism has traditionally been described by observing white Western European males. So, that's, it makes sense that you are… that that's a part of why you are having trouble finding as many participants, as you did. Um, but you still manage to get, um… Well, let me back up for a minute. Can you say a little bit about why… this work is important. I mean, this is, I know why this is important. I'm not asking for you to justify it, but it's… it's for our listeners who may not be familiar, can you… can you say a little bit about why your project was so vital and is so important.
Sheila: Yes. So, um, the first point from the research point of view and which led Leon to actually apply to engage in this research was that, um, these two groups of autistic individuals, so non-speaking autistic individuals, and Black autistic adults are hugely under-researched. When it comes to any autism research. Particularly when it comes to the specific subject of religion and spirituality. So, in research, you know, these groups seem to be underrepresented, under-researched, voiceless.
And then the reason I shared just before this, the visibility, the actual visibility of Black autistic adults in churches was also lacking. So I remember, for instance, I was engaging with one church leader, and they told me that they have never seen a Black autistic adult before. And I thought that was shocking. But that's just the reality of the matter. Yes, so the… under-research, them being an under-researched group, and then, practically and in reality, also being, um, non-visible in chat spaces meant that, one, they are unseen, secondly, they are also unheard. Which then, you know, looks to me like a social justice issue. You know, so it's from that aspect we highlight the importance of this research. That, yeah, Black autistic adults are not seen, they are not heard, but they do, they exist, they are present. So it's a social justice issue for us to listen to their voices, learn about their experiences. And see if, in any way, how they can be best supported in their spiritual lives and their religious lives. Yeah, so that's at least… one important, very important reason why this research was very necessary to be engaged in.
Ian: Yeah, it's sort of a remarkable comment, hearing someone say, I've never seen an adult Black autistic Christian. Because you know that can't possibly be true, right?
Sheila: Yes, yes.
Ian: And yet, with the lack of visibility, the lack of diagnosis with the, with, sort of the stereotypes that exist around autism.
Sheila: Yeah.
Ian: You can see how that… how someone would think that's the case. I love the, like, the running joke in the autism community is oh, of course, autism is only a recent invention, but your grandmother had an extensive spoon collection, you know, it's like autism has always existed, but it just wasn't called autism in a lot of contexts before.
Sheila: Yeah.
Ian: But so, you're right, I mean, I think that this, spreading awareness helps… can help with diagnosis, right, can help with people realizing, actually, there is a name for this constellation of traits that I have.
Sheila: Yes. Yep.
Ian: but also helps communities to be more accepting when they see that neurodivergence, that sometimes isn't readily accepted or isn't readily understood.
Sheila: Yes, yeah, yeah. And I think, um, in terms of stereotypes, so, the emphasis of our research on adults was also one thing that threw, if you like, the conversation, because a lot of people think that, yeah, autism happens to children, but these children… these children grow. They grow up to be adults. But somehow, when they grow, then they just disappear. And yes, it's from that kind of understanding, you know, this church that I was in, I've never seen… yes, I've seen autistic children, there are some in my congregation, but I've never seen an autistic, a Black autistic adult before… yeah. So our focus on adults as well, I think, was also a very good intersection.
Ian: Yeah. Absolutely. So, do you mind saying a little bit about what your findings were? What did you find about the spiritual and religious lives of Black autistic adult participants? Was there anything distinctive that you think maybe could be shared? Any themes that you saw that emerged?
Sheila: Yeah, so several themes. But yeah, I'll attempt to share a few, maybe 3 or 4. Yeah. So, one of the key themes that came out from interacting and listening to the experiences of Black autistic adults in the UK was that there was this strong desire, overwhelmingly strong desire, to belong in church and in the Christian community. However, when they do, there are so many barriers, that makes that experience frustrating and disappointment. So many of them were almost on a journey of trying to find what many of them call the genuine Christian community. So, many of them would say, oh, they grew up in church, they attended church with their parents, but they've gone on a journey where they are searching for themselves. And many of them were doing what I call church shopping. So many have… they'll tell you experiences of… 1, 2, 3, 4, 5 churches that they have attended in their lifetime up till now, and the experiences, and how, even after all of these trials, they are still searching.
So that need to belong, you know, irrespective of whatever experiences, negative or positive, they still wanted to be Christian, live their Christian life in Christian fellowship and in community, but there were many barriers. So that desire to belong in community really stood out. And it stands out even more when we, you know, consider what we've just talked about, about how they are… they seem to be invisible in church spaces. So that invisibility, or, them not being present. Through our finding shows that that is not… It's not their desire, that is not their intent. They want to belong, but there are barriers that makes it impossible or challenging for them to be in Christian community. Yeah, so that was a key, one of our key findings, the desire to belong in genuine Christian community and fellowship.
And then secondly, another key theme was what we called exclusion by design. And this is where the access denied aspect comes in. So we saw that by design, and a lot of the time, not deliberately, many church communities, particularly in this instance, many Black church communities are not set up to comfortably accommodate Black autistic adults or individuals. So, when it comes to things like, you know, sensory issues, there are no provisions or even considerations in many instances, that that could be a problem for somebody coming to church. When it comes to physical accessibility, there were issues there as well. 
In the Black, or African church community in the UK, as it is now, actually. One of the key… I did this research very recently in Scotland, when we engage with diaspora Christian churches and leaders, and we found out one of their key challenges was themselves finding a suitable place to worship. So many black churches, being new, if you like, in the Christian scene, not being traditionally from here struggle to find spaces to belong, to worship. So, a lot of the time, they'll just go wherever there's space. So I know of churches worshipping in cinemas, and hotel halls and all of that. So, which means that because of those challenges for the churches themselves, there's just very little consideration even given to, if you like, the added layer of who is coming and how can we physically support them in this space. Yes, so by design, many churches, um, Black and African churches we found, were designed to exclude, not deliberately, all of the time, but designed to exclude the comfort, and the… well, the presence, if you like, in general, of Black autistic adults. So that was the second theme, exclusion by design.
And then, another key theme, a third one, was the theme of intersectional marginalization. So, the research set out to consider the experiences of Black autistic adults, you know, with race being that important intersection, because that intersection is under-researched. So we try to find out how, if race, or being Black affected, you know, how… or the experiences of somebody who was autistic and from that ethnic classification or group. And then we found out that, yeah, there were issues there as well. So many of the autistic individuals spoke about racial stereotypes, certain racial stereotypes about what it means, what people think it means to be black, a lot of the time overshadowing their autistic traits.
So a lot of the time, people see their race, before they see their autism. So a lot of behaviors and how they come across. And this happened for many of the participants, especially in school. A lot of their behaviors and how they came across in school, in the classroom, in their learning, and even in just social interactions, were stereotyped as, oh, that's because you're black because, okay, Black people are loud, or Black children are misbehaved, or… when it wasn't that, it was because they were autistic. So that was missed. And almost… I'll say at least 80% or more of the participants we interacted with were all late diagnosed. So many of them had been missed, had had their diagnosis missed from when they were young, with, I think the oldest being diagnosed at, I think, yeah, over 40, 47 or so, yes, yes. So many of them had… they were missed. Because from their experiences and how they explained what it's meant to be Black and autistic, people misinterpreted and stereotyped how they came across as their race because they were Black, rather than because they were autistic and needed support. So that intersectional marginalization also came across uniquely for Black autistic adults in the UK. So yeah, I'll perhaps stop there and see if you have any questions, and if there's time, I'll go on to… yeah, one or more themes.
Ian: Sure. No, I think those are all so fascinating, because… All of those are really important to hear, and all of them have applications beyond just your research, which is not to say that they're not important in their own right, but they also apply even more broadly than that, I think.
Sheila: Yes.
Ian: The first two themes that you talked about, that desire to belong, I think, is true of any autistic person who still considers themselves a Christian. It has to be true, because it's just… it can be so hard to be in Christian community as an autistic person. And that exclusion by design, although there are some unique aspects to that in the communities that you talk to, I think we are… we tend to be… If we seek to make—in the church, I'm speaking more broadly, and this is based on my experience, right? So in the United States. When we, when we look to make worship more accessible, almost all the time what we're looking at is physical accessibility, and nothing else.
Sheila: Yes. Yep.
Ian:  And so we don't look at sensory experience, we don't look at, um, all these different… we don't look at intellectual disability, we don't look at all these different aspects of disability that can be used to exclude if we don't create thoroughly accessible spaces.
Sheila: Yeah.
Ian: So those first two, I think, apply really broadly. That's, again, not to say that it's not important in the sphere in which you're working. But I think those can speak to any Christian community that wants to be more inclusive of autistic people. And that intersectional marginalization, when I talked to Rudy Reyes, who talked about what it means to be Latinx in the U.S, and what it means to be… to have both a Latino identity and a neurodivergent identity and how frequently it's misattributed because we do, we are trained to see race and ethnicity before we see anything below the surface or anything beyond that. Um, so I think that these are… these are all really… fascinating themes that I think we would do well to listen to in general. Not only because it benefits Black autistic Christians, although it would be worthwhile if that were the only benefit, but because it benefits so many other groups of people, because we just leave so many autistic people out.
Sheila: Yeah. Yeah.
Ian:  because we just… we don't see these different things.
Sheila: Yeah, yeah, when it comes to even the non-speaking, as well, because we did consider that as well, and Léon, was the key lead in that task, so perhaps if we get to speak to him on the podcast here one of these days, he's going to speak more about that. But even considering that in light of what we found out with the experiences of Black autistic adults, you know, something like, you know, how speech is used even in church services. So, it's singing, you know, you're praying verbally, you are shaking people's hands, expected to… you know, one of the participants told me, you know, one of their biggest nightmares is to go to church. And then, you know, they are wanting to sit in a particular place, you know, not surrounded by too many people. They've found their comfort zone, and then, the MC or pastor, or whoever come and say, “So, turn to the person to your left, to the right, on the right, and give them a hug, and say whatever,” and you're like, oh, no, no, no, no, I don't want to give anybody a hug, not because I'm not a nice person, but because I'm just not very comfortable with that. 
But nobody realizes that to be a problem for anybody, at all. Yeah, so even singing, and somebody also spoke about prayer. That, oh, it’s my nightmare to go to church and just be asked to pray, and when it comes to Black, especially Black Pentecostal church practice and experiences, that's, like, a key thing, you know, the pastor can just say, oh, let's call Sister Sheila to come and say the closing prayer, and you're not prepared, you don't know, and you know… Yes, so all of these things are just aspects that normally people don't even consider to be a problem, but they are a real challenge, and they should be. There should be that awareness for people, for church leaders, for just normal Christians, and everybody at all, ordinary human beings to know that, yeah, we are all different, and we all, you know, we show up differently, and we all experience, you know, life, even in community, differently from each other.
Ian: Yeah, I share some of those nightmares. One of the things I've seen in churches is, at the peace, in my tradition, we pass the peace before, after the readings and before the Eucharist. And sometimes at the peace, I have seen churches ask anyone who's visiting to, like, stand up and introduce themselves, and I'm like, the horror, the absolute horror of being brand new in a room of people and being asked to speak, I just cannot even fathom. I cannot… I cannot, for the life of me, imagine that anyone is like, that's what I really want to do my first Sunday in a congregation. Uh… but those are things that we don't think about, and if that's party or tradition and extemporaneous prayer is another one. Like, I had to practice that when I was training to be a clergy person, because it does not come naturally to me, and I… I tend to have to think very thoroughly about what I want to say before I say it, because I am so used to being misunderstood.
Sheila: Mm-hmm.
Ian: That it's… it just really. makes my skin crawl to be… to have to be forced to say something before I'm ready to say it.
Sheila: Yeah.
Ian:  yeah, so we've started talking about my last question already, which I think is… Helpful to think about, but are there some things that you think faith communities or individual members of faith communities can change. Things that they can do differently to help make their communities and their spaces more friendly to autistic people, and particularly to multiply marginalized autistic people, to Black autistic Christians, to people who have intersectional identities. Are there any recommendations, in other words, that you would make?
Sheila: Yes, so the first one, um, that stood out from the research was the need for awareness and training. Because, yeah, I did mention we did engage with, um, Black and African church leaders as well. And we asked them questions like, you know, what do you know about autism, and what are your theological beliefs, you know, what do you think the Bible means by this and that. And we found out that, um, to a large extent… So, for instance, we asked the question, how often do you think about autism and theology. And the large… a large percentage said, oh, rarely. You know, so maybe we found that many don't even consider, in their, you know theological practice, they don't look at this aspect of life, yeah, when they are… they're even looking after church and after their flock.
So that was a problem, and then when it came to even just basic knowledge, about autism, we also found a whole array of beliefs and ideas. A lot of them not factual, you know, some based on culture. So, there was… there's that need to… for just even basic knowledge and understanding of autism to be shared among some of these groups, because it's the understanding and the knowledge that then leads to inclusion, because a lot of the time, there's a fear of the unknown. So if you don't know a lot about something, or you're not sure about it, then you're… almost automatic response is, you know, to redraw, to be cautious. And we found that that could be one of the… one of the issues. So when we did ask the church leaders to what they need, a lot of them said, well, we need training. Not just training and understanding about autism, but also about the theologies of autism. So how do we think about autism?
And in many cases, other… not seeing autism as a disability, but even when it comes to the broad umbrella of neurodiversity and disability, just how to engage theologically with some of these things, which they found difficult, because they… have never thought about it before, have not considered it before. And also have not even read or received any theological exchange on those matters. So training and awareness is extremely important. Just from the basic knowledge of autism, but also on theologically exploring the issue of neurodiversity and Christian faith.
Then, another accommodation that's important to be made is also practical access. So, like we have discussed this afternoon in… well, morning for you, just taking care of the physical environment in which people come in to worship. Making sure, you know, where possible, accommodations can be made for, you know, sensory issues and sensory differences. So, something very simple as tweaking the sound you know, in the… in the church, you know, bringing down sound levels, um, when it comes to practices like some of the ones we spoke about, prayer and hugs, and greetings, how to just make sure that all considerations have been made, that we are not all the same, and we all don't like the same things. So those practical accumulations when it comes to the worship environment, um, is very important. We did see one of the key things were exclusion by design. So how can we create access now, by design is the challenge, um, to put to church communities, whether Black and African church community, so indeed all church communities, in how to, accommodate autistic individuals.
And then finally, I would say, um, genuine representation. So many of the autistic individuals we spoke about talked about, um, tokenistic things in church. Oh, so we have one person, you know, doing something in the media, so that's okay. Oh, oh, can you come and help in the kitchen today, just so you know that, yeah, we've done something in your presence. When they don't feel genuinely that, even this is what they even want to do. So, for example, in one of the autistic individuals said that they… a lot of them were very interested in music. And for most of them, you know, they go to ministry in church was the music ministry, the choir, so many of them want to be part of the choir, and many of them spoke about barriers even to that as well. So once said, yeah, she joined the choir, and they do practice, and there's songs to sing, and one Sunday, she… they went for practice, and, you know, she wanted to lead one of the songs for the Sunday, and somebody said, no, you can't lead. You can't lead a song because you are disabled. Yeah, yeah. So…
Ian: Yikes. 
Sheila: Yeah, you can be part of the choir. You can come, we can let people see you, but nah, you can't really do what you want to do. We can't really let you, yeah, do… So, that genuineness of representation. So, it's not just about belonging, it's not just about presence. It's about actual belonging. And when we talk about the desire to belong, this is what a lot of the autistic and Black autistic adults we spoke to are looking for. They are looking for genuine community. And genuine belonging, not just presence.
Yeah, so at least if church communities can do, start with these three things, then at least we'll be on our way to… to a different story than, yeah, what we discovered from our research.
Ian: I think that's… I think those are… those are such good suggestions. Those are such a good starting point. You know, when we talk… the first point you raised was awareness, and thinking theologically about autism, and one of the things that I, I mean, I… I talk way more than the average clergy person about disability theology, even to the point where every once in a while I'll bring it up and you can sort of see someone roll their eyes about it, like, oh, there he goes again.
But the truth is, if the only time we ever hear about disability is in the healing narratives, and we treat disability as something in need of healing.
Sheila: Yeah.
Ian: If the only time we ever talk about mental illness in a Christian context is equating it with demonic possession
Sheila: Mm-hmm
Ian: Then we… then we come away with a very misshapen, malformed idea of what disability actually is.
Sheila: Yes.
Ian: and we have to have some counter-narrative to that. We have to be willing to talk about… you know, for me, the lens I see it through is the Imago Dei, but we have to be willing to affirm the goodness of every human being in some capacity, not despite disability, but even including disability.
Sheila: Yeah. That's really true.
Ian:  And you talked about practical access about, um, you know, tweaking things to make things more sensory-friendly. I always, you know, one of the things that I love is… and you talked about the fact that not everyone has the same sensory needs.
Sheila: Yeah.
Ian: And there are some churches where they have this overpowering organ, right? Like, that's in my tradition. We have a lot of organ music, right? And there are autistic people who are sensory-seeking who would desperately want that. They want to feel the base organ pipes in their chest, you know?
Sheila: The vibration. Yes. Mm-hmm.
Ian: But, so just thinking about what kind of sensory experience you have at your church doesn't necessarily mean you have to change dramatically, although if you've got a bunch of people who are having to cover their ears, or a bunch of people who don't feel welcome, then yeah, maybe something does need to change, but just thinking through and being able to say to people, this is what our experience is like. If you want pounding music, you know, if you want to feel the acoustic vibrations in your body, we're the place.
Sheila: Yeah, yeah.
Ian: Because that's not for everyone, but it is for some.
Sheila: I think—Yes, yes. I think that's where the heart of the genuine belonging goes to, because you really need to know people.
Ian: Right.
Sheila: take the time to know everybody, to know who they are, what their differences are, what they enjoy, what they don't, in order to be able to make those accommodations.
Ian: Yeah.
Sheila: And by which, you know, things are going with, you know, mega churches full of, you know, 2,000 members and 1,000 members. How do you really get to know the people.?
Ian: Sure.
Sheila: So yes, you are thinking, when it comes to especially the experiences of autistic individuals, Black autistic individuals in this case, yeah. And even in general, just genuinely learning, having that interest to know people, and who they are, and how you can support them as individuals. It's the heart of the matter.
Ian:  Absolutely, and how you can incorporate them, right? Don't just welcome them. Don't just say, this is a place for you to show up and worship, but this is a place that values you and your talents and your gifts, and wants to.
Sheila: Yes. And welcomes, yeah, all of you.
Ian: Yeah. Yep, yep. I love that. I love that. Well, Sheila, any parting wisdom? Any last thoughts before we, uh, depart? We are almost out of time, but we've got time, if you have—a little bit of time, if you have anything… any last thoughts you want to share?
Sheila: Yeah, I think, um, maybe on the theological point. Um, just to share that, yes, we are all children of God. You were talking about Imago Dei. We are all created in the image of God. So when it comes to belonging, and acceptance, and just being in fellowship, for not just church leaders, but, everybody particularly, well, Christians, to know that at the end of the day, that is what matters: you know, somebody being a child of God, somebody being created by God with a purpose. And that purpose being for the benefit of the whole Christian community. The Bible does say, that, you know, the church is the body. It's like the body, the physical body, with different parts. And one part can see to the other, you are not important or are more important than you. But the… total communal expression of, you know, the gifts of all the parts is what makes the whole body thrive. So, if one part is excluded, one part isn't functioning fully, then every part is missing out. So if Christians and church communities can envision fellowship and coming out, you know, Christianity, the church, as a body, as a family, in that sense, then, it would really be difficult to exclude somebody, because, you know, that's when you exclude, you exclude at your own expense, at your own loss.
Yeah, so having that holistic understanding of what it means to belong to the body of Christ, I think should underline our theology when it comes to church practice. And yeah, how we engage in fellowship as fellow believers. Yeah.
Ian: Amen. Well, Sheila, thank you so, so much for taking the time. This is, as I say, really valuable, really important research, and I'm grateful to you for sharing it with us and with our listeners. For our listeners, if you have any questions, you can message us at @autismtheology.bsky.social on BlueSky, or @autismtheology on Instagram. Or you can send us an email at cat@abdn.ac.uk. Even if it's just to say hi, we'd love to hear from you.