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 theology, sharing relevant resources and promoting ways that help faith and non-faith communities enable autistic people to flourish. If you'd like to access the transcript of this episode, it can be found in the link in the show notes. And today we have the wonderful Sofia Farzana joining us as part of our Sacred Text series. So welcome, Sofia. And I wondered if you could tell us a bit about yourself and your work for the listeners who may not know you. Sofia So my name is Sofia Farzana. I'm late diagnosed autistic ADHD from Pakistani heritage. I'm a visibly Muslim female and a single parent of three. I have, my background is in teaching. I'm a maths teacher by profession and I still work privately, most of the time with neurodivergent students and I co-founded Scottish Ethnic Minority Autistics a few years ago, 2022, and then reformalized in �23 on the back of my own discovery and also our co-founder Laura Bilton's discovery of being autistic as well. And then realising that support for people like us just isn't out there. We're based in Scotland, so a lot of the work that we do is in Scotland, but we do understand that the public content that we have is relatable to audiences overseas as well. Krysia Definitely. And I know that you've recently come back from Hajj, so I wondered if you could tell us about the experience and the reflections that you've had over there. Sofia Yeah, so this was my first time. I've been to Makkah Medina twice before for Umrah, and the very first time I went for Umrah, that was quite a journey there. Spiritually, it was quite intense for me. And then the Hajj, I think it's the analytical brain that I have. but I analysed every interaction and every incident, looking at what the learning was, whether it was other people's behaviours or the reasons behind the particular rituals that we have to do. It was, it was very, my lens was very, very different to a lot of the other people who are with me. And we worked in, we went in a group. Krysia Yeah. Sofia And at the end of it, I just felt like I feel more distant from the world or the people of this world than I have ever been before. And I just thought, okay, I didn't know that was possible, but I just like, I really dislike people. And I fell in love. Krysia Yeah. Sofia again are more so with Allah and Allah's mercy and the wisdom behind the things that we do or the way Allah teaches us to reflect and improve and teaches us lessons through people, through looking at previous prophets and their stories. and taking examples from them to see how they did it and applying it to our lives. So Hajj is all about sacrifice. So you'll hear a lot of Muslims saying, oh, Hajj is about patience, patience, patience, Sabr. However, I think that's quite a big word and it's very misinterpreted. To be patient means to tolerate oppression or to tolerate Krysia Mm. Sofia being treated badly? No, that's not what patience is. I, when I talk about Hajj, I look at sacrifice. Hajj is all about sacrifice. So we have Qurbani, the sacrifice of Ibrahim alaihis salam, the Prophet Abraham and his son Ismail or Ishmael. Krysia Yeah. Sofia and or Hajra, his mother, when the well of Zamzam was discovered. It's all the story of that family is all about sacrifice. So then the question I bring on myself and the people around me is, well, what do you sacrifice for the sake of God and for the sake of serving humans? What do you give up? And so for me, that's the essence of Hajj. It was giving up your comfort, giving up your space, giving up sleep, giving up your food, mostly sleep. Like we did not sleep for three weeks. It was just naps for three weeks, like one hour, two hour. If you're lucky, we've got three hours, but it was like 0 sleep day and night. We were just like round the clock, moving, going from place to place, that those five days of Hajj that you have. And it was all about what can you sacrifice to serve others. And you're doing that for the sake of Allah. You're not doing it for the sake of getting something in return. And that's the whole essence of sacrifice. That was the basic part of it, which no one actually teaches you about Hajj. It's just okay, you go here, you go to Arafat, you do this, you go to Muzdalifah, you do this, you go to Mina, you do this. And it's very robotic. The meanings behind what we do, for example, the stoning of the symbolic devils, like, and what those stones mean, like, you're not taught any of the meanings behind it. Like, when we collected the stones, how hard it was, middle of the night, 3am, sitting on a stony path, looking for the perfect size stone, not too light, not too hard. And then for us particularly what happened was that we lost our stones when we were going to go for the third day for stoning the devils on the Friday, because you do that for three days. We lost her as me and my mum. And it was all about how you can be prepared, all you want in this life. You think that, you know, you're confident. I've done all my good deeds and I'm prepared. I'm ready to face, you know, you know, the ultimatum. And then you have a look at your bag and you're empty handed. And that was like a slap in the face. It was like understanding that you can be prepared all you want. But Allah's mercy is what gets you into heaven. It is Allah's blessings that get you places. It's other people, Allah, inspiring other people to help you. So we got our stones from other people. And then at the end, when I had only two more stones, somebody gave me a bottle of stones, more than I needed. And I just felt like at the end of all of that anxiety, not knowing what to do, pure... Trust that we're here now, we need to get this ritual done, otherwise the Hajj is not fulfilled, it's not accepted, but we just walked in there thinking, okay, we're empty handed, but we'll just get it done somehow. And not knowing, walking into the dark and not knowing what's going to happen next, that's utter faith. Not knowing the end result, but we're here on pure faith and reliance on Allah. And it worked out and we got the stone and we got it done and in the end we got more than what we had needed. And it was like that compensation. So in the end of it, it was... Those stones, for me, symbolised our good deeds. You can lose them if you're not doing them with the right intention, or if they're too weak and half-hearted, if you're not doing them correctly with the right criteria. So it doesn't, for example, your prayers, we can't just pray any old way. We have a specific way of doing our salah or doing our wudu, or the etiquette of reading Quran, like we have a simple way of doing these good deeds or the way we give charity, do we do it to show off to people that we're giving charity? Do we show off to people that we're being good to XYZ people? So like why you're doing something and how you're doing it matters and that's why the specific size of the stone mattered, because that's your good deeds that they'd matter, they're intentional. Everything is so intentional, like throwing no stones was intentional because your good deed is like a barrier against this, against Satan, against Satan. Like our good deeds prop us up to distance ourselves away and those people who are intentional with their good deeds. They are like enemies of the shutdown because they're like, no, I'm not falling for these bad things. I'm not going to hurt people. I'm not going to be doing this and all that. So they look, that's how we were throwing them. No one ever tells you why we're throwing them. So this is why we're throwing them. This is why this is a particular size. And at the end, when I got the bottle, that was more than I needed, obviously I gave it out to other people who might have needed it. But I felt like I lost all my good deeds, all my stones at the beginning. I was prepared and I came empty handed. But then I was blessed with Allah's mercy and I got more than I required. And I felt like what we believe in Islam is when you are hard done by, when you're told to be steadfast and patient, you are given good deeds. When people hurt you, take away from you, oppress you, you are told that you will be compensated. Or when you have a loss, somebody dies in your family, someone's taken away from you, you are always compensated. It's that balance of that. Allah has a balance that if someone's taken away as the equation in this world, you are given it in the other world. So this bottle of stones was like my compensation. It was like, I didn't actually earn it physically. It was given to me. But then I did deserve the difference between earning and deserving. I didn't earn those stones, but I perhaps deserved those stones. That was my compensation. For example, we are told that if someone backbites against you, it means that their good deeds are coming to you. And so you've been compensated and they're losing their good deeds. And this is an example of why maybe I lost my good deeds is that maybe I did something wrong. I know I did something wrong. The minor sins that we do, we hurt other people not knowing, and we're not mindful of things that we do and then we lose our good deeds like that. So it could be that's why I lost it. So there's so much symbolism that we have in Hajj that only when I experienced firsthand that I've seen that there's wisdom behind that and then it's that whole being autistic. The rules of things, you have to be like, you have to wear ihram. For men, it's the white sheets, top and bottom, unsewn 2 sheets. For women, actually, Hajj is supposed to be hard for men because, and easier, it's actually easier for women because we can wear what we want. We have a scarf, we have whatever colour, we have normal clothes. Hiram is for men. However, it is a state of being and behaviour restrictions for a woman, for both actually. But for women, we can wear what we want. So for men, they have nothing to wear, just those two. And that's a reminder of their shrouds for their coffins, the two white sheets. That's what they're going to get when they're buried. It's a good reminder for them to humble men, particularly. And it's quite good because a lot of times it's the men are repressing. Not always, but most of the time. And then for women, because Alan knows with the women, they have different challenges. It's to be more merciful. Sofia We are, and it kind of goes the opposite of what people perceive of Islam, where Islam is oppressive of its women and favours men. It's actually like, no, you need to have a look at what real hardship is. So Hajj is harder for men, I have to say. My son was with me. And we had other men in our group as well, and we were discussing this kind of thing. Outside of this space, Krysia Waldock Yeah. Sofia Men are the dominating species and you know when they have power a lot of times it's oppression. Over here it doesn't matter how rich you are, you are on par level with the poor person wearing the same 2 white sheets. You are levelled and humbled. So that's the whole point of that is to really humble people down. Okay, but what I found testing was people's behaviours. And I feel like Hajj is not difficult when it comes to what Allah has ordained. What was difficult is having thousands of people around you or in your small tents, having 10s of people or hundreds of people. In one of our tents in Mina, the rooms, we had like 60 people. Krysia Yeah. Sofia And I was like overwhelmed with sound and noise and like 60 women talking at the same time. It was like really overwhelming. And the rules and the Ihram, I got back to what I was talking about. So there was times when people broke the rules and it was exhaustion and sensory overload, but I had a meltdown. And it was the breaking of the Ihram rules that took me over even though it was the lead up to it, you know, the underlying iceberg, it was the sensory, like not being able to sleep. And then someone put the big light on in the room and it was just like, ah, see things in my brain. And then having people shout at each other with their loud pitch noise and like female voices when they're shouting, I just can't deal with, at each other. Just one of my things that I really just sets me off, I can't handle that. So I did have one meltdown there and it was very public, but because I've learned how to deal with myself during a meltdown with my earbuds and my oils and then turning around and stimming, I have already practised all this stuff. So that's what I did. And my mum is my support. She was with me and she supported me there too, to try and calm me down, to just reassure me. And again, it became nonverbal. So I was texting to my sister back home and telling her, this is what's happening, this is what's happening, because then I can't talk. So that helped. Like she was there. Krysia Waldock 13:51 Yeah. Sofia It was early in the morning in the UK, but the fact that she was there since the second that was happening, I've had a meltdown abroad and or away from home. And I just text communicate with my sister and I have to process everything. And that's the only way I can calm myself down and like regulate myself. So that was helpful. So I already have a support mechanism in place. Krysia Yeah. Sofia So, an autistic person going to Hajj, they kind of need to know what will trigger them, what their supports are, what can they do in various formats, whether it's sensory or people are random, people back home, communication, all that kind of things need to be put in place first. If you really, because these things will, it's inevitable. I was expecting it to happen. Krysia Yeah, definitely. Sofia Yeah. Krysia And I guess it leads on really well onto the kind of next question. And I wondered if there were any passages of the Quran that you found particularly helpful as an autistic person. Sofia Yeah, so we talk about diversity in Islam. Islam is a very anti-racist type of religion, basically, when we talk about everyone's born differently. And you know, no Arab is superior over a non-Arab, no white is superior over a black or a black over a white. These things have been told by our prophet in his last sermon when he did Hajj. But the Quranic verse that relates to is in Surah Hujarat chapter 49, verse 13, where Allah says, we have created you, male and female, in people and tribes, so you may recognise each other. That's talking about diversity. Now, you can talk about us being different ethnicities from different regions, different languages. But when we talk about diversity, it's not just biodiversity, but also our neurodiversity that we are. And it's interesting because we talk about neural tribes. We talk about I found my tribe. Krysia Yes. Sofia I find my people, don't we? When we find other people who are like us, our neurodivergent characteristic that we are, whether we're dyslexic or ADHD, autistic or all combination. Once you find your tribe, your mental health has improved, you know each other. I know that it really helped me. Like I Krysia Yeah. Sofia I couldn't fit in with my fellow tribe being brown, being Pakistani, being a Muslim. I struggled when I found other autistics of different backgrounds, different genders, different sexuality, but the neurotype was the same. I gelled and I found my tribe. Krysia Yeah. Sofia So there's that finding your tribe and knowing your people, there's that. But then there's also recognising that we have differences and knowing that you've got people who are classed as we talk about neurotypicals who are different way of working. And then you have the neurodivergent people who have a different way of working, but the neurotypical in between themselves, we have a spectrum of how they are. And then with the neurodivergence folks, you've got a big spectrum of how we are. Krysia Yeah. Sofia But that doesn't mean that we're against each other. It's about working with each other by recognising each other, each other's strengths and weaknesses, and that whole double empathy. It comes into that too, the whole double empathy in there, that one verse. Krysia Yeah, it's so fascinating. And are there any other examples of how we can apply Islamic teachings to think about autism and autistic people? Sofia We're about power and control. Like we're told that we're less than, we communicate differently or we're too sensitive and all that. And it's about that whole power dynamic. We don't have that in Islam. We don't have rich over poor, man over woman. We don't have like someone better than the other, except from your good deeds, apart from your empathy and serving others and your worship. Krysia Mm. Sofia That's what you're judged by, not by how you perform for the world and who you are status wise. Status doesn't matter. Because if you look at autistic people, we're highly, you know, underemployed. We have mental health issues. Mental health is a big thing in Islam as well. Humazar, Sura Humazar is in the, I don't know the chapter number, Krysia Yeah. Sofia talks about, you're not allowed to make fun of people. You're not allowed to talk to people behind their, talk about people behind their back. You're not allowed to make fun of people, mock people in front of them. That is like huge sin for us. But that's how we're treated as autistic people. We're made fun of behind their back. We're like told that we're X, Y, Z, all these bad labels are given to us. Krysia It does. Sofia to our faces, we're discriminated against and we're bullied. I think that shows you that, you know, treat humans as human level, being autistic or not autistic comes second, the first human and you need to, you know, treat each other with empathy. Krysia Waldock Mm. Yeah, yeah, definitely. And I know Sema recently created a resource on Ramadan, which I was really excited about having done research with Muslims as part of my doctoral research. I wondered if you could tell us a bit about what spurred Seema to create this really exciting resource. Sofia So I started that in 2024 on my private account just because I was exploring more and listening to one of other autistic people, both locally and internationally. And I just started with 9 posts, very basic. What is it like? Krysia Yeah. Sofia being autistic and Muslim during Ramadan, because I really wanted to educate people around me. I think my mental health at that point was pretty low. So I think I was more, my autistic traits on the, you know, the typical ones that people will see were more pronounced and visible. Krysia Mm. Sofia And so I just need more empathy and people to understand what's happening underneath. So it was about, I was also still new to understanding my own autistic being and what makes me autistic and how that plays out in my daily life. And you know, hunger and to reception, perception, the impact of sleep, how I appreciate, how much I do appreciate Islamic values and Islamic traditions, importance of charity. I just want to look at that whole lens of what does it mean when you're autistic and then further develop that by talking to and listening to other Muslims as well. Krysia Okay. Yeah. Sofia with their input and their experiences of different lives. And I brought in more, you know, ideas. So I managed to get 30 days, you know, of aspects of being autistic Muslim during Ramadan so people can understand how to be more inclusive. So the things that we write. It's not just about being autistic and to be inclusive to autistic people, but people with mental health, with anxiety, with disabilities of any sort. And then it was for my community to understand being autistic. And then for the non-autistic community, no, Krysia Yeah. Sofia sorry, the white or non-Muslim community, should I say, for them to understand what Ramadan means for us. So it was like a two-way thing, being a Muslim aspect and being the autistic aspect for, so as a wider audience, both everything that we do is about educating our own community and then educating A non-Muslim or Krysia Yeah, definitely. Sofia the non-racialized community and how we experience a world. Krysia Yeah. And is there any particular information that is particularly you think others really should know about as a kind of a highlight or is it all kind of equally important in their people to go all 30 days because they're all fantastic? Sofia Yeah. I think the whole point was it not was not to go in depth, but to look at the vast aspects of life. If you got your hyper connectivity, you've got your co-occurring conditions, you've got our relationship with food as an autistic person, we've got our relationship with others. Krysia Mm. Sofia small things like gift giving, charity. It's supposed to be a comprehensive glimpse so that people can go dig deeper. It was not to give all the information about everything in one book. It was only just a wee window of... You, you'll find out more. Krysia Yes, definitely. And I wondered, as we come to the end of our conversation, what your hopes are for the future in relation to autism and Islam. Sofia It's probably more of the understanding of how they go together. Being autistic and being Muslim for me, I think goes hand in hand. Islam is like a special interest of mine since childhood, since I was like in primary school and teenage years. I broke away from the cultural norms. I questioned them, from South Asian culture and my upbringing was prominent rather than Muslim upbringing and I'm the one who understand, call that double standards, call that things that don't make sense to me. If it's not logical, I don't accept it. And then so that's why I went and dug deeper and look at the logic and the understanding behind why Islam says what, the boundaries and the expectations and the rituals, everything. I need to understand why. And I always get those answers. So it's like understanding that being autistic and being Muslim, they go on, you know, it's a good match. But in our community, again, back to the whole of the Hajj, people are different to actual Islam. Islamic teachings are different to how people enact them. People do obey the rules and they don't always follow. you know, they are judgmental or they have limitations. I would want in our community for our community leaders to understand autism better because they still think that just profound autism and that learning disabilities equals to autism or non-speaking equals not understanding. We've got so much misconceptions in our community. They need to make an effort to train themselves up, not just for the madrassas, not just for the children who come to learn Islam and learn Quran in the mosque, but for social relationships as well, when it comes to social issues like mental health and domestic abuse. or just generically abuse as well. As ethic people, we are more at risk of suicide, self-harm and domestic abuse, particularly women, and they need to treat this as a social issue. They have to, they have a burden of responsibility to address and that can only happen if they you know, educate themselves better. And that is learning through lived experiences like the work that we do and it doesn't have to be us, but learning from autistic people. So yeah, that's what I expect more of it to be taught. It is talked about more. People are looking at how autistic women in particular are more vulnerable. Krysia Waldock 24:50 Yeah. Sofia 24:58 for exploitation or how autistic men might need more support in their relationships. But if we're not even going to talk about this, then how are we going to know? Krysia Waldock 25:10 Yeah, definitely. And if people want to get in contact with you or see what's going on with Seema, how is the best way for them to follow what you're up to and what kind of other things have you got coming up for you? Sofia 25:27 Our website, we're trying to keep it up to date. It's www..sema.scot. We've got current programmes, the current work that we're doing, people who we work with to get in touch. It's just info at sem.scot. If anyone wants us to collaborate with them for delivery and training, that's basically the essence of what we do is provide consultation and training. And right now in Scotland, we're doing delivering community training. It's called Community Ambassadors. So the idea is to educate our community about autism rather than focusing on carers and autistic people to help themselves. It's rather creating a capacity in our community to understand that because they're the ones who need to care from outsiders who are not autistic. Krysia Yeah. Sofia because they're the ones who can either contribute to the problem or help solve the problem of the stigma and misunderstanding of autism. So we're doing community training up until October. And if other community groups want to come on board even after that, they can come and speak to us about what the needs are. So we do bespoke training in that sense. And then we also do consultations. for policy as well, governance policy, how to be more inclusive for our public and third sector organisations as well. Krysia Thank you so much for joining us today, Sophia. It's been so fantastic to have you share your insights. And thank you also listeners for joining us in this episode. If you have any questions, you can message us at Autism and Theology on BlueSky or Instagram, or you can send us an e-mail at cat@abdn.ac.uk, even if it's just to say hi, we'd love to hear from you.