Unpacking Autism Ep.4: Nothing about us without us: listening to and learning from the #actuallyautistic

Reena: [00:13]

Hi everyone, thanks for tuning in today. It’s going to be a great one. We have got an incredible guest on today. It is Iqra Babar – she’s a 22-year-old autistic Muslim woman with ADHD. She’s a digital artist, currently working on a web comic series that centres on neurodivergent characters, and she’s also studying to be a teacher at university. As well as this, Iqra is an advocate for autism, neurodiversity and disability, particularly in her ethnic and faith communities. She’s passionate about debunking stigmatised viewpoints and opening up the conversation around neurodiversity in these spaces. Iqra also enjoys playing video games, reading comic books, anime and manga, superheroes and fantasy genre movies and books. She also loves delving into South Asian textiles and embroidery. And I’ll share with you at the end where you can see her incredible work and commission any pieces you might be interested in too. They are superb. Welcome Iqra. I am absolutely delighted that you’ve taken the time out – despite all of the things I mentioned – to chat with me today and for our listeners to hear from you and your story.

Iqra Babar: [1:31]

Well, thank you for having me. Thank you for having me. I’m super excited. I’m glad to be here.

Reena:

Thank you so much. So, I think if we just start right from the very beginning, I suppose. You’re 22 – tell us about your diagnosis, what prompted you to get your diagnosis and how old you were. And yeah, talk to us a bit about that.

Iqra Babar: [1:55]

So, I got diagnosed when I was 17. To be more specific, it was literally the month before I turned 18, so at the end of 2017. And I actually got diagnosed after my brother did. I’ve got a little brother who’s 10 years old, and he got diagnosed when he was around three or four years old at the time. And when he got diagnosed, that prompted me to think about, ‘could I be autistic as well?’. Otherwise, I probably wouldn’t have thought about it if I didn’t see my little brother get diagnosed as well. And then it turns out that I am autistic and I do have ADHD on top of that, which honestly – it was really good, and in a way relieving to find out about that. But at the same time, as much as there were loads of questions that were answered about myself, there was also a whole gateway of new questions that opened up, because back then, I barely knew anything about autism and ADHD and just neurodiversity in general. 

To me, it’s just very telling of how much it’s talked about within our communities, within the South Asian community and I guess also the Muslim community. So, I barely knew anything about it back then. And it still is like a huge sort of learning experience, because I learn from other autistic people; I learn from other neurodivergent people and their experiences and the things that they go through. All of these are different traits and different sensory experiences and it all sort of added up – I think about the past almost five years – but in such a good and educational way for me, because I’ve been able to learn so much about it. And when I look back at my childhood, it also answers a lot of questions as to like why I behaved the way I behaved, why I was the way I was as a kid. Because I was always called the weird kid as a child; in primary school and high school, I was always called very strange or very weird. Not that there’s anything wrong with that, ‘cause I don’t believe in ‘normal’ or in normalcy or anything, but it’s just funny looking back cause I’m like, ‘Wow, I really was an undiagnosed neurodivergent kid’. It is kind of funny looking back on it now, but honestly, my brother prompted my own diagnosis, which I’m very grateful for because it has definitely made me understand myself. I honestly don’t think I would know myself nearly as well as I do now if I didn’t have my diagnosis. So, it’s something that I am very, very grateful for. 

Reena: [5:07]

Wow, that’s so empowering. Just going back a bit to when you were at school, are you able to recall any behaviours – or how you showed up, how you presented – that now you can see, ‘Oh, that’s why they said it was weird’?

Iqra Babar: [5:29]

I know one thing that I did a lot as a child was copy other people’s behaviours, and I would do that to try and fit in with others. For instance, I remember I would do this a lot, especially in the upper years, years four, five and six – I would copy the behaviour of the other girls in my class. I’d copy what they like; I’d copy what they didn’t like. So, if they come up to school one day, they’re like, ‘Oh, I like this cartoon, I like this and that’, I’d be like, ‘Oh my god, so do I’, in the hopes that I would fit in with them. But it never worked. It never worked out for me, because they always used to think ‘Oh my god, Iqra is just copying us’, you know? She’s just trying to do this to ‘be cool’, but like in a negative sort of connotation. So, it never worked out for me. No matter how much I tried, whenever I tried to copy someone else’s sort of behaviour, it never worked out for me. 

And that’s something I vividly remember doing in primary school, mimicking other people’s behaviours and trying to mask my own in the hopes that people will talk to me and they’ll like me and this and that. But again, it never really worked. I also feel like it’s funny, because as a child I was both shy, but also when I was around people I was comfortable with – within the school setting, so around other children and stuff – I feel like I’d be sort of really bubbly and hyper, which is a really funny combination. Like I’d be shy sometimes but also, I was always described by teachers as ‘bubbly’ or very hyper and things, which I think for me correlates with my ADHD a lot. Now, if I have like a very hyperactive moment, it’s not as outward as it was when I was a kid. But I still do have these very energetic, like hyper-esque moments. I think that’s probably one of the biggest things I can remember is just that want to be like others, which is unhealthy when I think about it now, right. But I think it’s a thing that loads of neurodivergent kids go through, is that want to be like everyone else. Because it can be difficult for some kids to accept you, essentially – accept the way that you are, especially if they’re not getting support from teachers or other guardians or whoever it is. For me, I’m very grateful that I have a very accepting family and a local community around me, the people I surround myself with, that have helped me embrace myself. But it’s been such a long journey doing that from childhood up until now. And honestly, it’s something that I’m always going to be working on, but I’m definitely a lot more comfortable with myself now than I ever was as a child, because I just remember always saying, ‘I want to be like this person. I want to be like that person’, and it was never healthy for me. 

But, ever since finding out about my neurodivergency and learning about it, and having a family and a group of friends that really accept and understand me, has just been so pivotal in shaping me and my identity, and learning to love and accept myself. Which is something I wish I knew as a child, but I’m happy that I know now.

Reena: [9.40]

Yeah, yeah. It’s really interesting to hear you talk about how you were presenting because I think it really speaks to why sometimes it’s harder to spot autism in girls. Because of the masking, and outwardly you may have presented – from what you’re saying – maybe a little bit differently, but nothing that would make a teacher obviously think that you might be autistic.

Iqra Babar: [10:09]

Well actually, funnily enough – I think my mum’s told me about this – they supposedly wrote – I think this is early on in primary school – on my record that I had ADHD, but they never talked to my parents about it and they never talked to me about it, and then I think they took it off. Which is really funny because I’m looking at myself now, I do have ADHD. So that was really strange to me, but it does go to show that people do have this sort of view that it’s very much a boy’s thing, or they find it hard to believe that a girl can be autistic, or a girl can have ADHD or whatever it is. I think that just adds to that notion that people do find it hard to believe that a girl can be neurodivergent.

Reena: [10:59]

I mean, the fact that a school could write that is a tad concerning, so it’s good that they took it off. But at the same time, you’d think wouldn’t it have been more helpful to just have a conversation with your parents or something? You know, about what they thought, what they were seeing. But yeah. Hopefully things have moved on a bit since then. 

You talk very passionately about how it all fell together. It all made sense after you got your diagnosis. So, what’s life like, being an autistic woman and having ADHD? Have you now been able to identify things which can be challenging for you and do you see benefits from seeing this in yourself?

Iqra Babar: [11:53]

Yeah, definitely. Especially in the recent few years, I’ve definitely been able to pick out what things work for me, what things I’m comfortable with, what things I’m not comfortable with. For me, it’s helpful in navigating my day-to-day life. For instance, I don’t like crowds; I’m not a huge fan of crowds at all. But there are exceptions where I will be around crowds and things. I was at an Eid milud I think a couple of weeks ago in Trafalgar Square, which was just absolutely packed. But I was with my family, so it made it more bearable. My family knows that I don’t like crowds and I’m not a big fan of them. But there are times where if I’m around people who I trust, if it’s like family or friends, then I feel more comfortable being within crowds. But if I was by myself, I’d absolutely hate it. I would absolutely hate it. I think knowing that has definitely helped me navigate around in society. And ever since I’ve been diagnosed, it’s been a very enlightening journey for me, because I’ve been able to start to identify what my traits are, and then different coping mechanisms and strategies that can be implemented to help me, and what the people around me can do to help me and to make things more accessible and accommodating to me, which is so invaluable. And it sounds like such a basic thing, to make things more accessible, and accommodate to people. But I know that not everyone has that same opportunity to be in an environment where things can be made accessible and accommodating to them, according to whatever needs they might have or whatever sensory sensitivities or things like that. I know that not everyone has that.

So, I’m very grateful that I do, and that my parents and my family and my friends have been very supportive ever since I got diagnosed. Very open minded and very accommodating to me. Life in general, I think for me personally, in terms of understanding myself, has been a lot better. A lot, lot better compared to my life in school as a child. In high school, I was a very quiet child. I didn’t have many friends at all, and that sort of want, that sort of need to copy other people and be like others, I think really elevated in high school. Which wasn’t healthy whatsoever, but I didn’t know anything else at the time; I just wanted to be like others. And ever since getting diagnosed, it’s helped me learn who I am, and I think that it’s so important to understand who you are, and love who you are, in order to try and navigate through a society that honestly wasn’t built for us. 

I have these conversations with my mum sometimes – ‘The world that we live in, just by default, just does not accommodate to neurodivergent or disabled people’. Which is really sad when you think about it because it should be. It really should be. And because it’s not, it makes it so much more difficult to navigate the outside world. For instance, like physically disabled people having those access needs, in like public areas and things. You don’t get that everywhere; it’s never sat right with me. I would think that would be something that would be accessible everywhere, but it’s not. The reality is that it’s not. For like autistic people, for neurodivergent people, there’s things like sensory sensitivities. Like fluorescent lightings, loud noises and crowds, for instance. It’s all of these different things; they sort of add up, I guess, and it can make navigating outside very difficult. And then you get people who will label that as misbehaviour. Or they’ll label that as them complaining, or as them having a tantrum, or just being uncooperative, and that’s the last thing we’re doing. We’re just having – sensory-wise – we’re having a lot of difficulties right now. And that needs to be understood more, because I feel like especially within the South Asian community, there’s this whole notion that they equate these sort of things as like complaining or like misbehaviour. And this is something I’ve heard a lot. I’ve heard this a lot from other people as well. 

Within the South Asian community, anything that they don’t see as outwardly good behaviour, they just associate with bad behaviour and it’s not. I feel like that’s what would make autistic South Asian kids just shutdown, or mask their difficulties to avoid that. Which again, isn’t healthy in any shape or form. And it does make life for them a lot more difficult to navigate, so I’m very grateful that I have a family and I have friends who understand my sensory needs and are always willing to accommodate for me and find ways to help me manage them, or find ways to basically accommodate for my sensory needs – or just any of my needs I might have as an autistic person with ADHD. But yeah, navigating life in general has been, on the whole, a lot better than what it used to be. But you know, it’s not perfect in terms of the outside world, in terms of going outside and trying to have a pleasant experience with the public, or whatever it may be. It’s not perfect, but family-wise and in terms of my local community, family and friends, it’s great and I’m very grateful for that. But in terms of the outside world, there’s so much more that needs to be done to make life more accessible and just accommodating to neurodivergent people, because in reality, it isn’t. And it’s something that really needs to be worked on, I think.

Reena: [19:19]

I’d love to hear from you a bit more about what sorts of things your friends and family have done to help you feel more comfortable in your surroundings. And also, a bit more around what you think more broadly. So, your outside experience is not as positive as it is amongst the people that really love you – that know you really well. What else do we need to be doing? Obviously, we can’t speak for all autistic and ADHD people, but the first part is, I suppose, what things do your friends and family do, and what would you like to see in the wider world that would make the world a bit easier for you to navigate?

Iqra Babar: [21:09]

Yeah. So, one of the things that my mum does – which, I’m so happy that she does – is that sometimes she’ll make foods that I don’t like. Aloo gobi, for instance. I cannot stand the texture of aloo gobi. I cannot stand the texture of it. So, I will not eat it – I just will not eat it. And my mum knows that I will not go near aloo gobi or anything with gobi in it. So, there will always be another option of food on the side, whether it’s a packet of rice or noodles or something in the freezer, there’s always something else to have. And she’s never said, ‘You have to have it’, or ‘You must eat this’. That’s never been the case. There’s always an alternative for me, which I’m very grateful for, because I don’t know what it is about the texture, but when I eat it, it’s like my body just rejects it. I just cannot – I can’t swallow it. I won’t go near it, but there’s always other food to have which I’m very grateful for. Because I still get to eat, of course, even if it’s not what my mum made for everyone else. 

I also don’t like bananas. And I’ve never liked bananas since I was a kid. That’s also another food which I just can’t stand because of the taste. It’s very sour to me and I can’t stomach it. And again, I’m never told I have to have that as like part of my 5-a-day or something. So, in terms of food, I’m never told that I have to eat this or you have to eat that. It’s very flexible in that sort of respect, which I’m very happy with. And that’s translated to my grandparents as well. So, when I go over to their house, there’s always something else to eat. So again, if they made something that I didn’t like, there’s always something in the fridge or there’s always something in the freezer that I can also have. Which feels to me very accommodating, because I think a misconception that exists within the South Asian community is that with food, for instance, if we don’t eat it, I feel like a lot of people might be told, ‘Oh, you’re being picky’ or ‘You’re being fussy’. Or, they’ll take it personally and be like, ‘Why aren’t you eating my food? Why aren’t you eating what I’ve cooked? You know, that took this amount of hours’, and that can make autistic people feel really guilty for their sensory sensitivities, which they shouldn’t. They shouldn’t feel like that, because it’s not our fault that we have these sensory sensitivities. So that’s one thing that happens in my family is that there’s always an alternative to food. No matter what, there’s always an alternative. Which helps me when there’s food that just texture-wise, I can’t eat. I know that there will be something in the fridge or in the freezer or just somewhere else in the kitchen.

With my friends, when we go out together and stuff, to catch up and things, like for food or for lunch or dinner – they always try to accommodate for me. So like crowds for instance. Or if we were going somewhere I was not familiar with, so like a part of central London that I might not have gone to a lot, we always plan our trips accordingly. So, I will always go with one of them, to go to the venue. Especially if I don’t know where I’m going. If we’re going to crowded places, they’ll ask, ‘Are you okay with crowded places? Are you OK? Up for us going here? Would you like to go at this time? What suits you?’ Yeah, it’s those small things, that really matter to me. But it’s also those small things that everyone should be implementing, because they make a huge difference to how we essentially navigate through life. It’s the small things that matter. And that’s just one of many things that they do accommodate for me. We have a group chat on WhatsApp and sometimes I’ll just randomly start talking about some of my traits, for instance. Just talking about, ‘I don’t like this, and this and this’, or ‘I struggle with this sometimes’. And they’re so understanding. They are so beyond understanding. I’m never made to feel guilty for the things that I struggle with, both my friends and my family. With my friends, for example, in the group chat, you know, they’re always very understanding, so they’ll never make me feel like – the struggles I have that are not my fault, that then they’re not my fault. And that it’s okay to have these struggles because we can then all work through them, and try to find alternatives for you, or find things that essentially work for you. Which again, is something that I’m very grateful for because growing up I didn’t have many friends. So, I’ve never been used to having that feeling of having this really close group of friends, who truly accept you for you. And I never had that growing up in a primary school or high school.

It was around the end of high school/sixth form, where I got to know my best friends now; where I got really close to them and where they just accepted me completely after I got my diagnosis. I remember telling them about my diagnosis actually. It was in year 13, near the end of sixth form and I remember telling them, and they were fine, absolutely fine with it. It didn’t matter if I was autistic and that I had ADHD in the sense that it’s nothing to put someone down for. And with my best friends, I never felt like I was being judged for being neurodivergent, or I was never made to feel like the things I struggle with are my fault. I was never made to feel isolated. They never made me feel left out. But I’ve had not-so-great experiences with other friends, who I’m no longer friends with, but with my best friends now, from the get go, they’ve always been willing to listen to me and understand me, which back then was a feeling I was not used to in terms of friends in school. Because growing up I didn’t have that with friends in primary school and the start of high school. It was a very new feeling to me, to have that innate acceptance. Of which, honestly, it surprises me that not everyone gets that. But then again, within our community, the viewpoints that people have about autism and just neuro-divergency in general. It’s really sad I think, to see just how they can be treated or how their struggles or their traits can be mislabelled as misbehaviour or arrogance, or just being disobedient – things like that. And it is unsurprising that because of that, South Asian neurodivergent children will want to mask their behaviours and they won’t want to show anyone their traits or what they struggle with. Because if they’re not being accepted or understood from the people close to them, then they’re not going to show anyone else that. 

Though for me I am very happy that I have friends and family who allow me to unmask, who allow me to essentially just be the rawest form of myself that I can be around them. And again, it’s all those little things that just make such a huge difference to autistic people, and to me, for instance, it’s made just the hugest difference. And that’s just to name a few. I mean, there’s so many other things that my friends around me do that I can’t think of right now because my brain isn’t letting me think of them. But that’s just to touch the surface. Yeah, that’s just touching the surface and what they accommodate for.

Reena: [31:47]

And I just really want to acknowledge you with that, because you’ve talked in depth about when you were younger and the difficulties of making friends, and just knowing who you were under your skin, to be then in a position where you received the diagnosis. And you embraced it. To the point where you selected which of those friends you wanted to keep in your inner circle, and which you were prepared to say, ‘Actually, this isn’t working out’. I mean, that’s incredible, because to come from a place where you always wanted that connection, perhaps it could have been easier to just allow everyone in, but that would have been to your detriment. So, I guess I just wanted to really say that that’s really bold and brave and amazing that you’ve basically surrounded yourself with the type of energy that you want to be associated with, with people who are on your path with you, and you’re prepared to just let go of those who aren’t with you.

Iqra Babar: [32:54]

Yeah, yeah. I think I’ve gotten to a point where I just don’t have the energy to entertain people who are not willing to understand me. Considering that I’ve had to deal with that a lot in primary school and high school, I just do not have the energy for it anymore. So, if I meet a person and they’re just genuinely not willing to understand me – like, ‘Goodbye’. Like, genuinely just, ‘Goodbye’. It’s just gotten to a point where I don’t have the mental energy, I don’t have the social battery to entertain that. So, immediately if I just sense that they will not hear me out or they won’t put the effort in to understand me, then I’m just not going to entertain this acquaintanceship, I guess. But also, funnily enough, I feel like when someone shows me kindness and acceptance, I feel like I become very trusting of them. Which is really ironic, I think, because at one hand, I’m not going to put in the energy to people who don’t want to understand me, but on the other hand, people who show me this sort of outward kindness, innately, I feel like I just get very attached to that. Maybe it’s because as a kid, from other people in my school I didn’t get that. Maybe that’s why I get very trusting very quickly with other people. I just find that contrast really funny. But I’m trying to tell myself, ‘Don’t get too trusting too quickly’ – in the sense that ‘Get to know the other person thoroughly first. Get to understand who they are as a person, if you both understand each other, if they’re willing to understand you’. Things like that. So, I just find the contrast really funny. You know, on the one hand, I will not put energy into people who just will not want to put the same energy into me. But at the same time, if you show me any sort of kindness, I will get very trusting and attached to that. But I just think, in terms of like, autistic traits, I just find that contrast really funny.

Reena: [35:27]

It’s so interesting, isn’t it? I mean, there was an old school of thought that autistic people couldn’t be empathetic. And I think about my son and how expressive of love he is and how many other autistic people I’ve met who like – when you demonstrate that you’re all in with your friendship for them or your love for them – they will be the most committed person in that room, like they are all there. They will do anything for you. And so I completely and wholeheartedly reject that autistic people cannot be empathetic. If anything, I would say they’re more committed, more empathetic than your average neurotypical person. It’s really interesting to hear you say that.

Iqra Babar: [36:11]

Yeah, no, definitely. I would definitely describe myself also as very empathetic because when I’m talking to like my friends about things that they’re dealing with, I feel like I can empathise a lot of the time with the things that they’re going through, emotionally. But at the same time, I know that not every single autistic person is going to be as empathetic. Which isn’t a bad thing. I feel like there’s a sort of picture painted, that if we’re not this thing, or we’re not this and that, then we’re bad people. Which is not true. I know some autistic people who struggle with empathy, but that doesn’t make them essentially bad people. But on the other hand, there are autistic people who are very empathetic. Like myself, I would definitely call myself a very empathetic person. I’ve heard that sort of stereotype myself that we cannot be empathetic. Which I would say for everyone isn’t true. We can’t label an entire group of people with that stigmatised viewpoint, because I think that there are loads of autistic people who are very empathetic, but there might be some who genuinely struggle with it or they can’t outwardly show empathy, because I think a lot of people associate empathy with an outward response. So, they want to actually see you be empathetic, or for you to be physically showing some sort of empathy towards the person. I feel like some autistic people do struggle with that, which can make them seem unempathetic – a lot of the time that’s not the case. It might just genuinely be the struggle of outwardly showing their empathy. They might internally feel it a lot, but maybe some people have struggles showing that outwardly. With me, for instance. I think I’m very outwardly empathetic. Like if I find myself empathising with someone, I’ll just like say right off the bat, I am empathising with you so much right now. And then I’ll talk about why I’m empathising with them. But again, I know that’s not the same for every autistic person, but I definitely do agree that that’s not something that every autistic person should be labelled as, because it’s not true. I think a lot of us are very empathetic, just because we don’t present it in the way that a neurotypical person or neuro-normative person might want to see it as, we’re immediately labelled as unempathetic, or rude, or this and that – which isn’t true at all.

Reena: [39:22]

Yeah, amazing. Yeah, completely agree. You have talked really passionately about the love and support you’ve received from your family and your local community. And I’d just love to unpack that a little bit as well, to just kind of pick your brains a bit about why ethnically diverse cultures sometimes struggle with accepting an autism diagnosis for their children or in their families. I’ve met many parents who feel like they’re not only battling against the world, but they’re battling against their own families and their communities to get their child accepted for the unique and beautiful being that they are. What are your thoughts on why we struggle with this?

Iqra Babar: [40:14]

I think that within the community the topic itself is just not talked about. Because from what I’ve heard, there’s this sort of notion within the South Asian community for example, that mental health, neurodiversity, all of these things – don’t exist. Or if they do then they’re immediately a bad thing. It’s like this catastrophic sort of thing that people have very little knowledge about. But that’s what it’s categorised as, I think, in a lot of ethnic communities. Particularly in the South Asian community, I think that’s what it’s innately labelled as, is this catastrophic thing, or something that’s disastrous, and that in itself is very damaging. And because of that, a lot of people will grow up with that sort of notion that neurodiversity, disability, mental health, autism, all of these things are just innately bad – which isn’t true. It’s not true whatsoever. But because a lot of people are brought up with that notion, they don’t know any better. And because these conversations are not had within the community, they don’t understand it. And it’s really sad. I think it’s really sad that these conversations are not had. Because they’re not had, then those autistic children within the South Asian community, for instance – those neurodivergent or autistic and disabled children – will grow up only knowing how to mask their behaviours, or only knowing how to suppress themselves essentially. Which is unhealthy for any child to have to put themselves through that, because they’re not surrounded by people who understand them. And as a student teacher myself, it’s something that we learn about all the time – child’s rights and accepting children for who they are, learning about their needs and their traits in order to best accommodate for them. 

And I think a lot of parents who don’t have knowledge about these things – or don’t talk to actually autistic people or other neurodivergent people – they will not have that knowledge to support their children. And something that I’ve seen a lot, ever since I got diagnosed, is a lot of parents follow the wrong information, because – for autism in particular – there is a lot of misinformation out there. One of the most infamous ones is a group called ‘Autism Speaks’, and you can go up to any autistic person and they will tell you how much they despise that group, because so much – well no, almost everything – that they do is very targeted towards hurting autistic people. And a lot of us have spoken up about that, that we do not support this organisation who claim that they support us and they don’t. You can look into the things that they do and it’s incredibly damaging to autistic people, but I feel like when parents are met with the notion that their child might be autistic, this is one of the many things that they immediately run to, when what they should be doing is looking up actually autistic people. There’s a whole movement on it on Instagram and Twitter. It’s the hash tag ‘actually autistic’ where you get to rethink some actually autistic people. And to me, that should be the first step, is to find actually autistic people online. Most of us have access to social media. So that should honestly be the first step, is to go and look at the work that other actually autistic people have done, and learn from those autistic people, rather than panicking and running to an organisation such as that, which actively harms us and does us no good whatsoever. 

I think the panic that parents have comes from this whole misunderstanding that they have about the topic. I think if they were more informed about what autism actually is, what neurodiversity is, what disability is – things like that – I think they would be a lot more innately accepting. But – especially in ethnic communities – because these conversations are just simply not had, there is this panic about their child, which stems from societal abuse on us. It’s dating back to years ago – people have never had positive perceptions of us. Or they’ve had extremely harmful and just straight up grotesque viewpoints on us. And it’s so damaging because that sort of stuff still carries on today in terms of all of these negative perceptions of us. And people will believe that. People will believe anything that they hear without actually doing research themselves or finding it out for themselves, and I think that’s something very prevalent within the South Asian community. They’ll just go with whatever they told; they just will not go and do the research themselves, which is so damaging because you don’t know what sort of harmful notions you’re essentially carrying forward. You don’t know what sort of toxic viewpoints you are going to be embedding into your children or into your family. And I just think it’s so important to actually listen to autistic people in order to understand what it is, so that parents don’t have that panic. Because I’ve always said that, and I’m a huge believer that you cannot understand autism without speaking to autistic people. You simply can’t. No professional is going to know as much as the autistic person, because we are the autistic person. We know what our traits are. We know what life is like for us at the forefront. We know autism because we are autistic people. The best way to learn about it is from the autistic people. 

[48:10] There’s also a movement online – I think the hash tag is ‘nothing about us without us’, which is calling out the media representation of us. There are various shows that try to portray autistic characters, but 1) they’re almost never ethnically diverse, and two) they’re always portrayed by a non-autistic actor, which I think speaks for itself how bad that essentially is, because you cannot mimic what an autistic person goes through, you know? Why don’t you just hire an actually autistic person to play an autistic role? It’s never added up to me why you just wouldn’t hire an autistic person to play a role with their identity. Because I feel like when you hire non-autistic people to play an autistic role, it’s like a hot bed for stereotypes. It’s like an open gateway to enforcing these stigmatised viewpoints. 

Something that I see a lot of parents associate autistic kids with, is Savant syndrome. And I know that there’s a show – I think it’s called ‘The Good Doctor’ – that portrays an autistic man played by a non-autistic actor who also has Savant syndrome. And Savant syndrome is essentially where, I think it’s when a person really excels in a particular field, so in The Good Doctor – I think his name is Sean Murphy, the character – he’s autistic and he’s also got Savant syndrome. So, he’s extremely clever in science – he is so advanced – he’s so intellectually smart. But that in itself is such a stereotype, because then people will assume autistic people are also Savants. No, we’re not. But that doesn’t make us any less. And I think that when parents realise that, at first there’s almost disappointment and there shouldn’t be; there should not be that disappointment because, just because we don’t excel in a specific subject, or just because we’re not Savants, we’re not less. And I think parents do associate things like that as ‘less’. You know, if we’re not this, or if we’re not excelling in that, we’re less. To say it to a child is very damaging to them and their self-esteem, because it’s almost telling them, ‘Because you can’t do this or that, or because you have difficulties with this, you are less’.  And to say that to a child, you don’t know what kind of impact that can have, especially if they’re sensitive to that kind of stuff. 

So, I think the bottom line is that with parents, rather than panicking and running to all of this false information that’s online, I think they really need to take the time to research about autism from actually autistic people. I think that should be the first and foremost step, because again, we’ve all got access to social media, we’ve all got access to the Internet, and the first thing we should be doing is, ‘Okay, my child might potentially be autistic. Maybe I should learn about autism from actually autistic people’, because the best way you’re going to get an insight on autism is talking to those actually autistic people. I would definitely say that should be the absolute first step that you should be doing and just not panic. I don’t know. I’ve never understood the panic, because I think this panic motion that people have comes from this stigmatised – I guess, fear? Because people don’t talk about it, they develop this fear of it. And that should never be the case, because that indicates that you’re viewing it as a very negative thing, or that you’re viewing it as something disastrous, but that’s just very telling of how little you know about it. But that also goes to show how much it needs to be talked about within, especially ethnic communities, because there are loads of notions that still exist that are very unhealthy and essentially toxic to autistic and neurodivergent children. I’ve never understood the panic that people may have. I think rather than panicking, it shouldn’t be something that you should be afraid of. It should be something that you should be willing to understand about. Because people, you know – no one’s the same, right? In terms of human beings, not one of us are the same, and not all of us are neurotypical. So having that sort of expectation for everyone can be unhealthy when you find out that your child might be autistic. 

So, I feel like parents should have that mindset that, ‘Okay, if my child is potentially autistic or they are neurodivergent, I’m not going to panic, I’m going to first reach out to actually autistic people, find out from them what it’s like for them, what sort of strategies and accommodations they have that helps them’. And then what can I do for my child?, you know, rather than instantly panicking, going, ‘Oh no, my child’s autistic, that’s not a good thing’. And then going into this frenzy of trying to essentially suppress their traits and trying to make them fit into this neurotypical bracket. Which again, is so unhealthy for an autistic child, to sort of force them into this bracket where they don’t belong. Rather they need an environment that’s accepting of them and is willing to help them with what they have difficulties with. I honestly just think the first step, I think parents just need to reach out to autistic people and learn from them. Honestly, just learn from them.

Reena: [55:07]

You know, I agree with all of that and I think as a community – as the South Asian community – generally speaking, in my experience can be hugely a place of comfort and unity. If something happens, like if someone passes away or someone’s born, we get together, we support each other, we turn up with food. We do what we need to, and yet when we have, in my experience, you have a child with an autism diagnosis, all of a sudden people are very uncomfortable. And I think one of the things I did with Evy, was when I embraced it, was being very open about his autism and what he needed from the people around him and from his community, so that he was welcomed as he is – not with sympathy – but welcomed for the being that he is. And I think when we try to hide it, we are just trying to maintain this mask that, ‘Everything’s fine, everything’s fine; my child is just like everyone else’s child’. And what we need to get on board with is the fact that our children are different – uniquely different and beautiful – and then when we outwardly project that confidence and we embrace the diagnosis, it gives the permission to other people to do the same. 

We will only normalise it when we all are open about it, rather than trying to pretend. Like dealing with it only within the confines of our house and pretending outwardly. Or in some cases I guess, with some families, they’ve just cut themselves off from their communities and their places of worship and faith, which I find really sad, because just because you’re autistic, that doesn’t mean that these things should not be accessible to you. And on that note, do you feel like your faith and your places of worship – do you feel that they’re accessible to you?

Iqra Babar: [57:00]

So, I’m a Muslim. And to me, Islam itself – the religion itself – talks so much about making Islam accessible and making it accommodating for other people so that they don’t turn away and that they don’t reject faith, but looking at the community in general, I think there is a lot to be done. I’ve talked about this before; I’ve written a blog post about it on my website. I was talking about how the religion itself is very accommodating, but the people don’t reflect that. So, one thing that I feel that masjids, for instance, could really implement for neurodivergent people, is having a quiet room. Just the idea of a quiet room, I think would be so incredibly beneficial for autistic people, for other neurodivergent people, for disabled people, and for honestly for anyone. But especially those groups, it would be so beneficial to just have a room to just breathe and recollect yourself, because masjids can get very busy. And for someone like me, who doesn’t innately like crowds, having a quiet room to just breathe for a few minutes – to just recollect myself, to just be alone for a while –should be something that’s made accessible for autistic Muslims. And that’s something I hardcore stand by, is that masjids should have a quiet room. So that we can go and essentially decompress. So that we can still access our faith, within our own accordances, within boundaries that suit us. Because a lot of us can’t deal with crowds and that’s okay, we just need to have the accommodations that sort of work around that. So, I think the quiet room would just honestly just be such a brilliant thing to implement, and it would help so many people to essentially just calm down. And to just recollect themselves from the busyness of a masjid. 

Yeah, I’ve always said that the community is what needs to be worked on, but the religion itself talks so much about disability, it talks so much about neurodiversity, and it talks so much about accommodation. And it’s just ironic to me that a lot of the time it’s the community that will struggle to reflect that. But the religion itself – Islam itself – it’s what’s made me fall in love with the religion all over again, is finding out about the different ways that God talks about accommodating for us and making things easy for us and treating others with kindness. There’s honestly so much social justice and so much equality that Islam is centred around, but the people need to reflect that as well. I think that Islam itself is a huge advocate for disabled people and for neurodivergent people. I just think that the communities need to reflect that. So, a quiet room for instance would just be so beneficial for disabled and neurodivergent people, and it would help them access their faith in a way that doesn’t isolate them. So that they can still go to a masjid and have a room where they can just be by themselves and not be judged for it. It’s the things like that where I think the community needs to put the effort into making it more accessible for us rather than dismissing the things that we struggle with. 

I know that there is an initiative going around about translating the Quran into sign language, which is – you know it – that’s huge. In terms of disability advocacy and for disability rights, that’s a huge step in the right direction. But there needs to be more of that. And that needs to be localised – in local mosques as well. Having that accessible, not just in really huge national mosques, but in local mosques as well – having that accessible to everybody. It’s things like that, that needs to be much, much more prevalent, so that it’s not something where we have to travel ages away for, but it’s within a few minutes distance from us. Because that’s what access is – it’s making things easier for us to essentially… access, right? it’s making things easier for us to essentially have. And I think that’s one of many things that it is working towards that need of accessibility. And again, things like quiet rooms in the mosque, and again, not just big national mosques, but local mosques as well. Just having something like that would just be incredibly beneficial. I know, for myself especially, I would love to have something like that, just to go in a room and just be by myself for a few minutes and then when I’m ready I could come out and then, do whatever I need to do. It’s just things like that. I think the community needs to respond better to what the religion itself is saying.

Reena: [1:03:17]

That’s so beautiful. Thank you so much for sharing that. And it’s really made me think as well – I used to go to the temple a lot, but after having Evy, I didn’t feel it was accessible to me for all the reasons you’ve articulated – and it’s such a simple thing to implement. You know, these are big buildings. There’ll be a room, you know? And it just needs to be okay to see people going in there, spending as long as they need, and coming out when they want. It’s so much less human effort than trying to translate an entire religious text into sign language, right? Which is equally important. But I think it’s people like you that will drive this positive change. And listening to actually autistic people share how they need places of worship to be accessible, that hopefully will bring about this sort of change. So, I’m really grateful to you for sharing all that. 

So just as we close, what would be the last thing – what would you really want any autism parent listening in today to this podcast – to take away?

Iqra Babar: [1:04:28]

Listen to your child. Like 100 %, listen to what your child is asking from you. I know that within autism you have speaking autistic children and you have non-speaking autistic children. Regardless of how they communicate with you, whether it’s through verbally speaking, whether it’s through AAC – so alternative forms of communication – just listen to them. Listen to what they want, listen to what they need, listen to what they’re struggling with. Because you’re not going to understand what they need if you don’t have that line of communication with your child. On top of that, listen to actually autistic people in order to actually understand what autism is. Listen to autistic people. Centre their voices; centre autistic voices over whatever professional you may be looking to get advice from – centre those autistic voices first. And that’s something I think so many people need to understand – is that you cannot have a concrete understanding of autism without listening to autistic people. So, 100 % listen to your child, listen to what they are asking from you, what sort of needs that need accommodating to. Don’t dismiss them of them, or don’t try to fit them into this neurotypical bracket that they simply do not fit into. Rather, make an environment where they feel comfortable being their autistic self in, and being in an environment where they can flourish as an autistic person. And just simply having that line of communication with them, so that they feel like you are listening to them, and that you as a parent are listening to autistic voices. Because that’s the only way you’re going to understand autism properly – is listening to those autistic voices.

Reena: [1:06:40]

Amazing. And anyone who wants to find out more about you and your drawings – where can people find you?

Iqra Babar: [1:06:47]

I’m mostly active on Instagram; my handle is a @iqradraws. It’s the same handle on Twitter as well, and I’ve also got a website where I occasionally write blog posts and stuff: iqradraws.co.uk, but you’ll mostly find me on Instagram.

Reena: [1:07:06]

Thank you. Iqra, you have been incredible. I think it’s been such an empowering discussion. I cannot see how anyone could listen to you speak and not see the beauty and majesty of who you are becoming, and the privilege that the children you are going to teach in the future will have of you being a teacher is just incredible. So thank you so much for giving me your time today to share your thoughts and perspectives on how we can be more inclusive. I mean, I can’t even summarise – we’ve covered like so much stuff. Incredible, absolutely brilliant. I’m really grateful. Thank you.

Iqra Babar: 

Thank you for having me. It’s been a pleasure.