Friendship, family, kinship & community

 
About

This week we speak with Cynthia Tam and Stephen Bedard about autism and the church. Cynthia and Stephen help us to learn from multiple perspectives: parent, pastor, professional, self-advocate, ministry leader, and author. We talk about friendship and family, kinship and community, the language we use and the beauty of communication beyond words.

You can find Stephen’s writing on the Disability and Faith Forum at disabilityandfath.org and at his website  stephenjbedard.com. You can order Cynthia’s book Kinship in the Household of God through her website cynthiatam.ca or on Amazon.

Cynthia Tam is an ordained minister and the National Coordinator for Disability Ministries with the Alliance Canada. Having Completed her Ph.D in Theology she is involved in teaching in the Alliance Stream at Tyndale University.  With a professional background in occupational therapy, Cynthia co-founded Village Eulogia for Families with Special Needs and continued to serve families with children with disabilities through this organization.

Stephen Bedard is an author, pastor, autistic advocate, and parent. He has a DMin in the area of disability ministry from Acadia Divinity College. He lives with his wife Amanda in Brookfield NS and is co-pastor at Brookfield Baptist Church. Stephen’s oldest two children have autism and live in a group home setting. Stephen is the author of How to make Your Church Autism Friendly.

Episode transcript

[00:00:05] [Keith] Welcome to Disability and the Canadian Church, a podcast where we talk about the intersections of disability and the Christian faith in Canada and beyond. I'm Keith Dow.

[00:00:16] [Jasmine] And I'm Jasmine Duckworth. We'll be your hosts and we're so glad you're joining us today. We're excited to learn from diverse voices as we welcome a couple of guests each week to share their insights and expertise on aspects of disability and faith. Cynthia Tam is an ordained minister and the National Coordinator for Disability Ministries with the Alliance Canada. Having completed her PhD in theology, she's involved in teaching in the Alliance Stream at Tyndale University with a professional background in occupational therapy. Cynthia co-founded Village Eulogia for families with special needs and continues to serve families with children with disabilities throughout this organization. She is the author of Kinship in the Household of God: Towards a Practical Theology of Belonging and Spiritual Care of People with Profound Autism.

[00:01:11] [Keith] Stephen Badard is an author, pastor, autistic advocate and parent. He has his Doctor of Ministry in the area of disability ministry from Acadia Divinity College. He lives with his wife Amanda in Brookfield, Nova Scotia and his co-pastor at Brookfield Baptist Church. Stephen's oldest two children have autism and live in a group home setting. Stephen's the author of How to Make Your Church Autism Friendly.

[00:01:36] [Jasmine] What did you find interesting in the conversation today, Keith?

[00:01:39] [Keith] I found it really helpful as we were talking about being a, a family, the family of God, the household of God, kinship, friendship, some of those different ideas and how they intersect and hearing from, from Stephen's perspective as a family member, a dad, a pastor, how that's looked for him. And then for Cynthia as well, coming from different perspectives and how they relate to those concepts, it just made me think about my own relationship with the church as well, and how do I experience belonging. How do I express that and receive that in different contexts?

[00:02:11] [Jasmine] I liked how transparent they were about how their language and their thinking has changed over time because I think this is something that everybody notices when we're learning and reading and talking about disability and autism, is that the language keeps evolving. And they both addressed that in their talk today. And it was just great to see a real-life example of people who work in the field and have personal experience in the field and are continuing to learn and evolve and are open about that process. And now here's the interview.

[00:02:58] [Keith] All right, well let's dive into our conversation today. And I know our podcast here is called Disability in the Canadian Church. Today we're talking really primarily about autism. And so I just want to be aware and conscious off the start as well that there are some distinctions between autism and how people tend to think of disability, especially in people, how people self-identify with autism as well in terms of neurodiversity as opposed to potentially disability for some folks. So let's, let's dive right into that and I'd love to hear from each of you, what is your connection to autism? Why is this topic important to you? Stephen, why don't you start us off?

[00:03:43] [Stephen] Sure. And my connection to autism in some ways dovetails very nicely with that, the question of the connection of autism to disability and whether or not it is a disability. So my introduction to it really was when my wife Amanda and I started having children and we had a son at first and everything looked to be what we would consider normal. I realized that normal is a very moving target word, but to what we expected anyways, in terms of his development, everything was going the way we expected. In fact, I remember being in a doctor's office and seeing a poster that said, by this age, you should have this many words. And I counted out his words and it was almost exactly where he was supposed to be. And I kind of breathed a sigh of relief that he was developing. Well, however, things began to change and he began to lose his words and to exhibit some behaviours that just kind of confused us.

[00:05:02] [Stephen] And we ended up seeing a developmental pediatrician. And we spent a day talking to this doctor and he went away to consult with his colleagues and he came back out with a box of Kleenex. And we knew that at that moment that we were gonna get some emotional news and we were given the diagnosis of autism. It was actually called something else back then. It was PDDNOS, pervasive developmental disorder, not otherwise specified because they still wanted to watch where his development was going. And at that time we had a younger daughter who had been born and they asked if she could go into a research study 'cause they were trying to diagnose autism earlier. At that time it was very common for children to be diagnosed at 5, 6, 7 years and they wanted to get a diagnosis much earlier.

[00:06:10] [Stephen] And so we did indeed include her in that study and she ended up having a diagnosis as well. And they are greatly affected by their autism and to the point where our daughter ended up going to live in a group home at the age of seven. She is now 20 years old. So basically two-thirds of her life has been living in a group home. And our son, he ended up going into a group home at the age of 13 and he is now just turning 22. So he's been in that for quite a while. So I would say for them their experience of autism would be disabling. They are minimally verbal. Our son actually can talk but chooses not to. And I, I say that because I've heard him every once in a while, we'll just speak in perfect sentences.

[00:07:24] [Stephen] I can only think of a handful of times that that's happened, but it has happened. So we know he has the ability, but for some reason, it doesn't come out unless he's, he's quite angry at the time. And then he can, he can speak pretty good, but there's a, a lot that they're not able to do. They will never live independently. It's unlikely that they will ever have a job or get a driver's license or anything like that. So their experience of autism is disabling. But then there was a third example of autism and that was about eight years ago after some suspicions for myself and even more so for my wife that maybe I might be on the spectrum as well. And so I went and went to my family doctor and he referred me to a specialist to evaluate where I was at. And it ended up that I received an autism diagnosis as well. It's what would've been called Asperger's syndrome, but that diagnosis is gone now and is just put into the general umbrella term of autism spectrum disorder. But, so that is our experience. So I wouldn't identify as disabled myself, but I would think that my children do indeed have a disability.

[00:08:58] [Keith] Yeah. Thank you. I think that really helps to set the stage and it, it comes by naturally, right? For you, the topic of being kind of thrown into this world and, and faced to ask those questions really early and to wrestle through some of those things. So thank you for sharing that. What about for yourself, Cynthia? What's a connection there or interest?

[00:09:17] [Cynthia] I come from probably the other end of the spectrum perhaps I was an occupational therapist before coming into ministry. So I worked with what is now known as Holland Bloorview, do they have the children's center? I don't know, Holland Bloorview Children's Hospital or something like that. So I started working with people who have trouble with speaking. So I worked in a technology clinic supporting people in producing writing and speech and work technology. And it was at the time, now we are talking maybe, oh, about 30 years ago, dating myself, that when the Ontario government does not recognize autism as a disability. So they did not receive funding from the government to have a speech-generating device. And but with, with us working with a range of different clients, we see them and I particularly was touched with that inequality. As Stephen said, there's, they, they are disabling factors with autism and in this particular case speech generation.

[00:10:47] [Cynthia] And so we came from that kind of range in the hospital until the Ontario government changed everything and when autism was catching a lot of attention. So a lot of research money started pouring into it. And I was actually very well aware of the researcher, you talk about Stephen in testing babies and trying to recognize autism early. I was still in the hospital system then, and then the switch is really dramatic. Then the government started to fund everything device-wise for autism and a lot of more research is pouring into it. So that was my, my exposure clinically. And then the other part is my involvement with an organization called Village Eulogia. And it is an organization that supports families with children with disabilities. There, I started to realize and from that experience that also for my, myself being a lay leader at church I guess and starting a support group within the church, I started to see most people, most families coming into the support environment were and are people's work autism. There's a lot more support going on with a number of disabilities groups, but autism for a long time has been a group that, well the church is still rejecting, I would say in most cases. And the society still do not recognize and accept and, and support them. So that's why the support system is much more needed in the autistic community in my contract at least. And that's really raised my, my interest and concern for the population and where that took me into my research.

[00:12:58] [Jasmine] Thanks. Really interesting to hear how both of you have had such different paths that brought you to this topic. I wanna talk a little bit about the language around autism. So Stephen, you talked about being on the spectrum and that's a term that I think most people will have heard, the autism spectrum. Traditionally, I've thought of it as kind of like a linear thing where there's, you know, a progression of symptoms in terms of how much you're affected by it or we've seen language like profound or severe or mild or you know, all sorts of terms that people put onto people with autism. And I've thought of it as a linear spectrum, but I've started seeing more of a conversation about it being more like the full-colour spectrum, like the colour wheel and that every case is different, every person is different and unique. So I would like to hear both of you, what do you think of it? How, how have you seen autism play out in yourselves and the people you know and what have, what's your experience been with understanding it on that spectrum?

[00:14:05] [Stephen] That's such an interesting and difficult question. I, I've struggled with this a lot and if you look at my writings, if you go back a number of years, the blog posts or other things that I have written, I will refer to mild or severe. I will refer to other ways of looking at it in usually in that linear manner. And there's a lot of pushback definitely from the autism community to get away from that and to, to not necessarily differentiate based on needs. Cuz that's really what that kind of language is, is speaking about. So if you say a mild, someone with mild autism, they're able to get through life with minimal supports and someone with severe autism, they are going to need more extensive supports. And that has been changed even within the diagnosis context. It's now level one, level two, level three.

[00:15:26] [Stephen] And that also people have a problem with, cuz it's focusing on, on the needs. And when I get pushback from that, I, I understand that and, and I appreciate the, the pushback, but I will then say that my experience of autism is completely different than my daughter's experience of autism. What our life looks like is completely different, even at the areas in which it's the autism that is forming us. That experience is, is very different. And so while for some people it is offensive to talk like this, I've struggled to find the, the right image in terms of the, the colour spectrum. I think that there's some potential there. But the truth is someone is going to find a problem with that one as well. There is absolutely no image that is going to be without some kind of difficulty. And, and, and one of the challenges with autism is very many people with autism are extremely analytical.

[00:16:49] [Stephen] And if someone is gonna be able to find a problem, it's gonna be someone with autism. And I, I don't say that to be offensive. I say that as a self-confessing critic who sees, who sees little details that can bother me. So I think that there is some potential there. I don't get too worked up though about the linear idea because sometimes what we need to do is work on those, those needs that are there. And if the spectrum concept helps us to, to meet the needs of people with autism, whether in the church or in schools or some other context, then I'm kind of pragmatic when it, when it comes to that,

[00:17:38] [Cynthia] I, I'm very much in agreement with Stephen in the DSM-V, as Stephen has alluded to. We, we need is using the personal support as a way to define the levels of severity. So behind, so there is in that way linear, but then when it's more like a spectrum is that, let me flip back to our clinician's kind of mindset. In, in our brain there's different areas that control different functions. And in autism, the involvement in the brain could be very scattered. So in that sense, even in my study when I focus on so-called profound range of autism, I see very different functioning levels, in terms of language and, and speech, let's say. So although people who are not able to speak some actually also have language difficulty, I, I have had people who really only able to say or type or understand in one or 2 or 3 words kind of language level to some people that we know will have published books after books who have significant autism. So that in, in that sense, it is a whole spectrum of very wide varieties there. But in terms of how to communicate the kind of support the person need, there is that linear ideas there that would be helpful.

[00:19:24] [Keith] Thank you both for reflecting on that. I think that's really helpful to get a sense of, you know, the range, the spectrum of autism and, and how it impacts people in different ways, as you were saying, sometimes very positively and, and sometimes in difficult ways too. Cynthia, in your work, you're ref you've referred to your research a couple of times and I know as you've said that that's come out of a history of working in hospital clinical settings and then in church and lay settings. But for your, your book, which is very exciting to have Canadian scholarship at this intersection as well, you really managed to connect the dots between theology and the lived practical experience of Canadian families, Canadian communities. I wonder if you could tell us a bit more about your research and in particular, you, you speak to the lives of Dylan and Ellen and Red Hill and the Cross as the congregations there. Can you tell us a bit about how that came to be and why was it important for you to, to work with churches and families in this way?

[00:20:34] [Cynthia] So it is within what working the, with the churches that bring the awareness of what is required for us to really, truly welcome people with disability in general. But as you well know, you know, PhD study, they really need to focus on that area. And as I explained because a lot of the support work that I've been doing is work artistic people and their family. So that brought the focus into the areas of research. And so what I wanted to do is to see how the church can be that community of belonging for people with autism. And again, we alluded to the support need and being aware of the mo the most need live with the people with more significant autism. And that, that shifts my focus into profound disability. So I worked with churches directly the two churches that you mentioned, obviously not their real name to find a way to really explore what it means to belong.

[00:21:52] [Cynthia] And so I, I want the church to actually welcome them into the fabric of their community. And I realized that until the people can really see the, the individual with autism as a person, not different to any other person walking into the church and being able to invite them into the church in all different ways. Like in Sunday service, in discipleship and in, in talking about intro, introducing them to Christ, all those areas of what the church would do, what anybody coming to the church. So that's really what I wanted to do to explore. And so I introduced the circle of friends, which is not a new idea really, it's been around, but I have found in the educational world that after the deinstitutionalization, that they have actually been using it to help autistic children to be integrated into the classroom. So I bought, that's why I borrowed the ideas and used it in a church to form a small circle around the person with autism and then used the, the circle also as bridges so that the, the person in the circle would use their connection to then expand the circle, right?

[00:23:25] [Cynthia] I started with three in both churches and then it is in one church, it grows quicker and the other church really grows very slowly. But that's the idea. And then when the church community begin to see how the person with autism actually function provided with some support, then other people are more willing to come to be a friend with them. So with Ellen, as you mentioned, they, their church, many other people started to automatically invite her to sit with them instead of walking away from her and they invited her to join their outing to an indigenous community, to the powwow and things like that. It all comes with when they get to know Ellen as a person who is outgoing, who likes to make friends who's fun, and then, you know, the friendship goes and, and, and things started to, to evolve.

[00:24:31] [Keith] Yeah, I love that example of a circle of friends and I think it's something that we can all relate to as well, right? When you, when you show up at a community, at a church setting, wherever it is, it's on a Sunday morning or another day through the week and you're, you're part of a little group, you look for that circle of friends to say, oh, they're, they're my people, right? And so I think it's helpful how, how you use that concept in the book and in life to really relate to churches because you don't want to just bring in kind of these more institutional models that have been worked with in the past. You wanna find something that really resonates kind of in that community setting. Stephen, I'm wondering if you can pick up on that and speak to how you've seen, whether it's those circles or community connections, church connections, how have you seen that work in terms of wrapping around people in your congregation who experience disabilities?

[00:25:26] [Stephen] The community idea and the circle of friends that is such an important part. Oftentimes what churches are looking at, they're looking at programming, you know, how do we, what is it that we can put in that's formal in nature? And I, as a pastor, I understand that, you know, I like this, this three-step approach to getting results, but nobody really has that as their, their greatest need. And I'm not just talking about people with autism, but people in general most often are, are looking for a sense of connection and, and that happens in a really organic way and it's, it it's kind of hard to to to make it happen, but there are things that we can do. So I think about a, there was a, a young man at my previous church who had autism and, and he seemed fairly aloof, but I was determined that I was going to connect with him, but I wasn't gonna be pushy in, in the way I did it.

[00:26:46] [Stephen] And so what I did is after our service, we would have a, a coffee time and he'd be kind of circling the table there and I would make an effort to say hi. And, and at first he would just completely ignore me. And, and that would happen for a couple of weeks. And then, but I would keep saying hi to him and with his name, and then he gave me a side glance and I'm okay, I'm, I'm making some progress here. And then after a few more weeks, he actually looked at me and then after a few more weeks he, he grunted when I, when I said that. And then eventually after a few months of being determined to do that, he actually approached me and asked me for help to, to dress his coffee, to get his milk and sugar in there. And I thought, this is, this is great. Like I've, I've taken, I I've been trying to enter into relationship with him on his, his terms, not trying to force it in, in how I want it to happen. And, and that worked and he had numerous relationships with people in that, in that congregation because of that. So it's, that really is, is the key. If you can get that to happen, really all the other stuff is, is secondary.

[00:28:11] [Jasmine] Thanks. I was reading some of the posts that you've written, Stephen, for the disability and faith forum. You wrote a number of blog posts over the years about your children in and, and their involvement in church and their faith and how you see that developing in them. And you said a couple things that I, I loved, you were talking about your son and how in his teen years he started to show an interest in coming to church and in taking communion and possibly baptism. And then you were saying you're contrasting that with your daughter and that she is not interested in participating in church the same way. But you said, I still see God at work in her sometimes it's just her repeating her repetition of the line from veggie tales. God made you special and he loves you very much. That's good theology. You also, in another post we're talking about your children don't use words to communicate.

[00:29:06] [Jasmine] And so much of the way we engage at church and the way we've been taught to engage with God has been verbal and we build relationships through talking to each other and how you've seen them build relationships with people and with God without using words. And you talked about the incarnation and the, the word made flesh is God giving us an opportunity to connect with him beyond words? I wondered if you would talk about that a bit and how, how churches can think kind of bigger picture outside the box to be able to connect with people in multiple different ways rather than always being so verbally based or always doing the things that we've, we've done in ti in terms of the type of worship and the type of engagement. What other ways can churches connect with people with autism or people that don't use words?

[00:30:01] [Stephen] Yeah, and I, and I gotta say that when I talk about this, I, I don't talk about it as someone who's got it all figured out. We've moved to Nova Scotia and our children with autism still live in Ontario, so we don't see them face-to-face. So some of the, the ways that we used to communicate are, are not available to us. And so we would, will we do Zoom calls or FaceTime or, or something like that. And our, our visits are a little bit challenging even as parent children visits because it's, it's difficult to have a, an extensive conversation with someone who is minimally verbal. But we do find, we do find ways and, and, but how we, how we communicate with our daughter is different than how we communicate with our son. Even though one of them or both of them are, are minimally verbal, where they are and, and what, how they respond, what they're interested in that type of thing are, are different.

[00:31:13] [Stephen] And so that's the, the biggest key is to find out how do you respond or how does this person respond to you or how does this person respond to other people? What is it that they're interested in? And, and work with that. Again, as a pastor, I would love to have the, the one way in which you can interact with minimally verbal autistic people, but it, it doesn't, it doesn't work that way. But the great thing is if we are open to it, they will teach us. They will help us to, to figure that out and we just have to observe and be patient and to be teachable. So I'll gi give you one example again at a one church that I was at, we had what we called the, the candy man. He was a guy who always had pockets full of candy that he would give to any children who, who were there.

[00:32:14] [Stephen] And, and our son liked candy and so he was, he would always seek out this guy and one, one Sunday that the guy forgot to bring candy and my son had his hands in the pocket there trying to see if there's any, there's gotta be some candy around somewhere. And, and he felt really bad that he didn't have any candy. Interestingly there, the next Sunday there was about four or five of the, the guys at church who all brought candy because they wanted to make sure that our son had candy and he liked it. So, you know, one of the, the ways that we often talk about marriage relationships as the, the five love languages, right? And that's helpful in, in marriage relationships, but it's helpful in other relationships as well. And I think that there's some potential there. I'm not gonna try to name them all cuz I usually get four out of the five and we will forget one of them.

[00:33:15] [Stephen] But the fact is that there are different ways that you can communicate with people. And so, you know, sometimes, you know, a pat on the back is all the person needs or you know, a gift of some candy or something like that. So it might be verbal and it might not. And in terms of in churches, you know, yes, we often, at least in the, the tradition I'm in, we focus a lot on, on the sermon as being a, a central part of, of the worship service. I don't know what my son feels about my preaching, but you alluded to the time that there was communion and we hadn't talked about what we were going to do. He had never received communion before. And so we, I didn't know what was gonna happen and I realized this as I was leading the communion service and was wondering what my wife was thinking and what she was planning.

[00:34:16] [Stephen] And he responded in a very positive way. He seemed totally engaged. Oftentimes he would seem aloof, but he was completely engaged there and received communion and seemed emotional in a kind of reverent way, is how I would describe it. And somehow that really connected well with him more so than perhaps some, some other things there might be. So we just have to be aware that different people are going to respond in different ways. You know, even thinking about my, my own experience in church, I remember during my time in the, in my twenties when I started attending church again after a time away, a lot of my friends basically loved the music and endured the sermon and I endured the music and loved the sermon because that's the way my mind was. I didn't get anything out of the singing of the songs. I did it, but I didn't enjoy it and it didn't, it wasn't meaningful to me. But intellectually listening to the preaching of the word and trying to understand how the, the Bible fits with our experience today, that was something that I got something out of. So we're all different.

[00:35:45] [Stephen] Find out who is in your church and adapt as much as you can and, and just remain teachable.

[00:35:51] [Keith] I think that's really, really an important point about how we each receive God. We each give thanks, we each worship differently, right? And so we started off talking about neurodiversity a bit and how that relates to, to autism. We all, we are all neurodiverse, we are all embodied differently as well. And so our interactions need to look different. And I think that's one of the beauties that each of you bring through your work and through your ministry is that you have a full appreciation for kind of the range of the ways people express themselves and also receive God. And that's such a powerful lesson for us. I, I think of the, the quote of the statement that when you, you're holding a hammer, everything looks like a nail. And sometimes I feel like we get into that, that pattern or that rut as churches where we have a sermon, so we're gonna, we're gonna use that sermon and we're gonna use it every Sunday and we're gonna maximize the time we spend on it, right?

[00:36:45] [Keith] It is, it is, it's valuable. I don't want to kind of undermine the aspect of, of people really thoughtfully delivering the word in different ways, but at the same time, it's not the, it's not the be all and end all for everyone, right? And, and so how do we, how do we diversify our communities? How do we reach each other in different ways? How do we greet and welcome one another in different ways? I think these are all aspects that you call us to pay attention to. Cynthia, in your book, kinship in the Household of God, you know, this really beautiful quote, it really resonated with me. I think it resonated with Jasmine as well. We've worked at Christian Horizons for many years and started out in direct support where we would provide supports for people who, it's difficult to know how to say it, but who had some significant kind of behavioural ways of expressing themselves.

[00:37:38] [Keith] So it could, it, it could end up hurting in, in different ways that maybe self-injurious behaviour at times. But often that was due to the expectation that people be able to communicate using words, right? And so the, you can imagine frustration, the difficulty for folks if they're in pain or in their difficult situations or something's happening that they don't like to kind of express themselves and get that across. And so you have the, back to the quote, page 23. There's, there's Denise who says sometimes hello can only be said with a gentle headbutt, right? And there's these different ways of, of expressing ourselves. It can be a wave, it can be a verbal greeting. For some people it might be that gentle headbutt just to say, Hey, I'm here. I'm, I'm close. I want to be with you. I'm looking forward to being around you. Can you talk to us a bit about, you know, both what that meant to you and how you saw that kind of expression working itself out in, in these communities?

[00:38:38] [Cynthia] I think coming to the end of pandemic, I think that just probably be easier to understand in some ways. I don't know if you encounter that after a time of social isolation, when you see people you don't know if you should be shaking their hand, you should be giving them a hug, you should be bowing. Or how do you greet each other and how do we find out? But to us, right? So I think it's really is the same thing. We all have our preferred way of greeting one another the love language, right? We all have that and we need to understand that to be able to show our love and to receive love. And so I think with autistic people, when we understand that they are like, each one of us is a person with our own unique preference, with our own particular way of expression.

[00:39:45] [Cynthia] And if we are willing to be open and vulnerable and wanting to get to know the person, we'll find out, right? If, if you are standing in a distance, there is no way you find other than bowing as a greeting. But once you actually enter into a dialogue, you'll find out a lot more about the person and what the person really feel comfortable doing. And you know, we, we have certain expectations in our society, something we call normal unquote, and we expect that kind of behaviour. And so it, it really is to open ourselves to it, be exposed to a wider range of expressions.

[00:40:37] [Cynthia] Ellen, since we talked about her, I could say her weight of showing intimacy, there was one time when I visited her at her house, she tried to squeeze in to my back between me and the chair. And because it is in that pressure we in between, that she feels secure and intimate. And I initially didn't understand that until her mom explained it. That's what she's been trying to do then I know this is the intimate tie that she's trying to, to give to me when I visited her at her house. So it, it's a matter of getting used to getting to know one another. And I, I really don't think it's very different to how to get to know anybody else.

[00:41:28] [Jasmine] I love that. That's been one of the greatest gifts that working at Christian Horizons has given me is it's taught me how to listen to people in ways other than words. And I, my life is so much richer for it, my time working with people that don't u wor use words to communicate, prepared me to be a parent, to a baby that doesn't use words to communicate. It helps me connect with newcomers to Canada that don't speak English. And so we have to find other ways to communicate other than shared language. There's such a beauty in recognizing that there's always communication. It just might not be what you expected. So I I love that. And that intimacy you talked about learning somebody's language that's based on gestures and facial expression and body language and touch it, there is a kind of intimacy there because you know, you're, you're really connecting with who they are because you don't have the kind of like the veil of language, it's just heart to heart or, you know, eye contact is, there's that intimacy. So thank you for both of you for like, clearly explaining that. Cynthia, in your book you talk about kinship, you said kinship, kinship is not a word that's often used very much in our society, but it powerfully relays what you're getting at in the heart of the book. So can you tell us how you got to that work word and what it means to you?

[00:42:56] [Cynthia] It's probably not a word that we use very much we lost in our society, but it, it is something, as you say, it's very powerful. But I check that word from Paul's theology of a kinship community. So we know that Paul doesn't address the people in the various churches other than brothers and sisters and sometimes father. So that's why the kinship is wider to say sibling because they, in the, in the concept of the first-century church, the household is bigger than our nuclear families. So it has the kinship is then bigger than siblinghood. But I like that ideas first of all because Paul used that to focus our attention that all about identity is really root us being children of God and therefore sibling to one another. And when we actually taking from that, then what I really see there is the difference between kinship and friendship.

[00:44:11] [Cynthia] I think as a sibling then it is not up to us to decide who is to come to the church, right? It's a gift that God give to the community. What we should do is to receive the gift fearfully and wonderfully as what God wanted to enrich our community friendship in some way, especially in our current understanding of friendship is a choice. And so you choose certain people as your friends, right? So, but when we are looking at a church community and y Paul's ideas of kinship, that's what I see the difference. When we can see each person as God's gift give to the community, as a dear and beloved sibling, then we will need to be loving the person as God has loved us. So yeah, that's the the key concept that I want to explore in my book.

[00:45:20] [Keith] I love that. And we've talked a bit about, you've already talked about circle of friends, right? And so I think those two concepts are really helpful as we think about how we relate to each other as the body of Christ. That it's, it's not just a choice, right? We are in a way stuck with each other as fellow members of a family. I think we've all experienced that to some extent or another, right? That, that we are in a way responsible to one another, responsible for one another, responsible for ourselves. And we are all children of God together. And that identity cannot be changed by depending on how much we like one another or relate well to one another. At the same time, I think of Jesus calling us as friends, right? I've called you friends and how powerful that is. So how do we, how do we bring those two together and recognize our commitment to each other, our, our stuckness in a way, but also call one another friends in this way that we've been describing.

[00:46:19] [Keith] Where we get, we really learn who each other is. We learn the gifts, we learn the beauty, we learn how they relate and how they communicate and how we relate and how we communicate. And then together we express that, that love of Christ in community settings. And so it's no, it's no small task, but it's also a wonderful opportunity, right? And I think each of our lives have been made so much richer by coming across people who are different from us in, in many different ways. And that's one of the beauties of the church too, right? In a society where you can easily sign up for the groups or the places that you're with people who are exactly like you, we don't have that option with the church, right? That God has God, God loves us all and calls us his children. Before I preach too much, Stephen, let's go back to you for for a minute here.

[00:47:13] [Keith] And so you, you wrote the book, how to Make Your Church Autism Friendly. And I know that that was a while ago now, so you, you've, you've also reached, released a number of different blog posts and ideas, disability and faith forum as Jasmine mentioned. But how do we, how do we start to do that? How do we start to embody that reality together as, as family, as friends? Any tips or, or I I know none of us have all the answers as you have mentioned, but any tips for churches that are thinking, I'd love to live into that reality. How do I start going about that?

[00:47:46] [Stephen] Yeah, so in my book, how to Make Your Church Autism Friendly, interestingly, I don't focus on friendship, which you would think might be important to have in there. And that's because at the time that I wrote that I was getting contacted by a lot of people, church leaders, pastors Sunday school teachers, and so on saying, we have a child with autism, what do we do? Like we need to do something right now, where do we start? And there are some practical things that can happen and that need to happen. And all those things are very important. And, and that's in many ways what, what I focus on in that. And, and that has to happen. But since then I've, I've tried to focus more on what it means to connect with a person with autism, and with a family of a person with autism. Because when, when you're welcoming the, an individual with autism oftentimes their family is a part of the picture and they have their own needs as well. And it really comes down to communication.

[00:49:15] [Stephen] There was a time when I took a break from pastoral ministry and we were just going to attend church and we were gonna bring our son with us, he was still living with us at that point and we, we were not sure what that was going to, to look like. And so we we're gonna go to a specific church and we contacted the pastors who we knew them already, and the lead pastor and the, the family pastor came to our house and they just sat there and listened to what, what it was that we thought that we needed, what we thought our son needed. They didn't come saying, okay, we are a good autism-friendly or disability-friendly church and we have a program ready to go. We can just plug your son in and everything will be good. They didn't promise anything to be honest, other than that they would try and that they would listen and that they would ask questions when they didn't know the answers.

[00:50:27] [Stephen] And I thought that was such a great posture for them to take. Where I've seen things go bad is when churches have made an assumption ahead of time saying, I know what this family needs or I know what this individual needs and so we're gonna put it into practice without having talked to them. And it almost always goes bad. You have to be in communication, preferably to talk to the person with autism but include the family as well, and just be ready to learn and to adapt and to pivot when you need to. And it can happen, it absolutely can happen. If anything COVID-19 has taught us that when we're motivated enough we can change when we're facing circumstances that we don't fully understand and that we can, we can adapt to what's going on. And so we had a pretty strong motivation to do that during COVID-19.

[00:51:45] [Stephen] And we can do that with families with autism as well. And you contact other people, you learn what's best practices are and and and so on, but seek to have those, those relationships with people and to, and to realize that it can be messy, it can be uncomfortable for some people. There was one Sunday when we were in that church in the middle of the service, our son said, just kill me now. And, and, and at that moment we wish that he was a little bit more minimally verbal because it was a little bit uncomfortable to hear that in that, in that moment. And he was, he was giving words from a movie, but you know what, the pastor wasn't bothered by it. And when he would hum during his sermon, he would say, isn't it great that everyone is welcome here? Cuz he would, he recognized that there were people in the congregation who were giving dirty looks cuz they didn't want the humming, they didn't want the, the noise during the service. And, and the pastor was proactive to, to respond to that. So the, the number one thing is, or number two, the two things would be communication and, and just being willing to be teachable that you're willing to, to change and, and not start out from the, the posture of already knowing the answers.

[00:53:20] [Jasmine] I love that because those are both, in theory not difficult, start with communication and being teachable. Everybody can do that. Cynthia, you've been heavily involved in church leadership and you mentioned earlier that you're your co-founder of Village. Do you have anything to add on tips that churches and faith communities can put into practice to be more open and welcoming in a place of belonging for people with autism and their families?

[00:53:51] [Cynthia] If I'm to add, I would add that the church is in the best position to provide support for the whole family. I think that beyond supporting the person with autism we know that autism affects the whole family. The parents, yes. And that is also pretty well understood. But the siblings, where is another group that I think the church really is really, really well positioned in their children ministry, in their youth ministry to reach out to and in a family with a child with bother autism, as you could well imagine, a lot of energy will be diverted to the child's need and the siblings who are neurotypical, we use that language, then could feel left out or neglected sometimes. We have some in Village Eulogia we had a sibling support group, so we to the story and, and sometimes it's really heartbreaking to hear some of the stories and I could always think that, you know, if this whole family is welcoming to the church and if the church is really supporting everyone in that family, then the siblings would have received really good support as well. So I think, yeah, that would be something that I, I do like to advocate for the church to consider.

[00:55:31] [Keith] Well, this has been an amazing conversation. I know I've learned a lot and I'm sure that our listeners have as well for people who want to, to learn more, want to follow along with your, your work or your writing or even just resources perhaps that you wanna point people to. Where can they go? Let's start with you Cynthia, and then turn it over to back to Stephen.

[00:55:52] [Cynthia] Some of the resources that we have as the alliances in the Alliance Canada website and then Village Eulogia has, has some resources there too, but there really a lot of books out here. It's increasing in volumes and, and covers many different areas that, so I would encourage people to read. And the current, the recent publications by EFC, a disability resource is a really good simple little booklet that is very helpful.

[00:56:33] [Stephen] So I have some resources available as well. I have a website where I try to put together a number of resources and blog posts. It's called, it's disabilityandchurch.com, but I called it When Disability Comes to Church, but the actual u r l is disability and church.com cuz I didn't think of the name until I had already gotten the domain. So that's the way it worked. And I have a pretty broad definition of disability there. So I tried to talk about everything from autism to physical disabilities and neurodiversity in general mental health and even addictions. So it's, it's a pretty, pretty broad umbrella that I'm working with and I try to recommend some books and podcasts and so on. I try to read as widely as I can and to share what I learned at that particular website.

[00:57:41] [Jasmine] Thank you both. Thank you so much for joining us today. It was such a pleasure to chat with you and to get to know you and hear your stories and the work you're doing and we just, we hope that you continue to find ways to connect with people and that you continue doing the good work that you're doing. Thank you.

[00:58:03] [Keith] If you like today's episode, please take a moment to review us on Apple Podcasts or other platforms. It helps people to find this podcast. And why not share this episode with a friend. We'd love to hear your thoughts. Send us an email ministry@christian-horizons.org.

[00:58:21] [Jasmine] This podcast has been brought to you by Christian Horizons and is part of the New Leaf Podcast Network. Christian Horizons is a faith-based organization out of Canada. We serve people with intellectual and developmental disabilities in Ontario, Saskatchewan, and in several countries around the world through Christian Horizons Global. You can find more information about us at christianhorizons.org. Special thanks to Tim Bratton and to the New Leaf Podcast Network team and to you for listening.


 
 
Alanna Johnson