Neurodiversity 101
In the premiere episode, hosts and neurodiversity advocates Heidi Frost, Karen Kehdy, and Shija Sapru discuss the basic terminology associated with the topic. They also take the audience through the neurodiversity movement, explaining its evolution and its relevance in today’s society.
Whether you’re a parent, educator, professional, or simply curious, this episode offers a clear and thoughtful introduction to understanding and embracing neurodiversity.
Transcript:
Karen Kehdy:
Have you ever felt like the world isn’t built for the way your brain works?
Shija Sapru:
Or why our schools, colleges, and workplaces designed to cater for one kind of brain?
Heidi Frost:
Speaking of brains, what if we start focusing on what’s strong rather than what’s wrong?
Karen Kehdy:
Welcome to Neurodiversity MENA Podcast. This is Karen Kehdy. She/Her. Joining me today are Shija Sapru and Heidi Frost. We’re so excited to kickstart our premiere episode Neurodiversity 101, which will be a part of introductory series to break down the basics of neurodiversity.
Shija Sapru:
Thank you Karen. I’m Shija Sapru. She/Her. You know, I often get asked as to when did I start learning about neurodiversity? Where and how I got educated about neurodiversity. The fact is, when the professionals associated with the field told me all about what my children cannot do or what their challenges were, I just wanted them to be valued for who they are. Rather than looking at both the strengths and challenges at the same time. So in fact, today we call it as embracing neurodiversity. Back then, I didn’t know much about it.
Karen Kehdy:
So.
Shija Sapru:
I kind of started learning neurodiversity through blogs, articles and probably random posts on LinkedIn. Probably.
Karen Kehdy:
Yeah. It’s interesting. In my case, Shija, Heidi, it was more of a journey, like it was a long journey. It all started by, following autistic self-advocates, neurodiversity, self-advocates, reading books made by neurodivergents. And my curiosity led me to do this thing. At that time, Judy Singer is the Australian sociologist who coined the term neurodiversity back in 1998. And it was mainly through her work that I learned most about neurodiversity and how it can shape, you know, how our understanding of the body brain differences. And I had to I had to say I had to learn and unlearn a lot. And I can tell you the unlearning was way more than the learning. And…..I also, to be honest. To be fair, I mean, I learned a lot from other activists and advocates in the community, but I know it would take a whole episode to mention them all. So yeah, I’m grateful, honestly for the whole neurodivergent community and autistic community because I learned a lot from them.
Heidi Frost:
Yeah. No, I, I hear that the whole episode discussed, we learned from. Hi, I’m Heidi Frost. She/Her., Finding out that I’m Autistic like really helped me. It made everything make so much sense about, like, my life and my past, including why I’m so interested in this topic. Because understanding how neurotypical people’s brains works just became a fixation. Because that’s what I needed to survive. And yeah, it’s the quote goes, there’s value in knowing I’m a correct zebra and not a broken horse.
Shija Sapru:
For those of you who don’t know, we are all part of the Neurodiversity Media platform, a platform that has been passionately created by parents of neurodivergent children, neurodivergent themselves, and some of us who are truly passionate about the field, who want to dive deeper.
Heidi Frost:
Yeah. And I think we definitely encompass a lot of identities. I mean, we’re researchers, we’re advocate self-advocates, self ID and, professionally diagnosed neurodivergent. So just all kinds. A nerd! Nerd right here.
Karen Kehdy:
Yeah. Well, let’s make sure that we all understand. I mean, terminology is better. I know that, you know, recently there’s a lot of misconceptions around the term and the concept. Neurodiversity, probably because, you know, the whole concept is gaining momentum recently. But, it’s also important that we highlight that the whole concept of neurodiversity is there since years and years. It was there since 1998, basically since Judy Singer coined the term and maybe probably before that, but no one coined it. So yeah, only few people recognize it back then. And I think even now we still need more awareness. We need more neurodiversity awareness. It’s much needed.
Heidi Frost:
Yeah. And, neurodiversity is most often compared to biodiversity. It encompasses like brain structure differences, neurology differences and just everything that we as humans contain differences in our brains and how we think. And also like how our brains and our bodies communicate. Like it’s not just brain or the most of it’s brain. Some of it’s how my brain talks to my hands, for example.
Karen Kehdy:
It’s interesting when you say that, like how your brain talks to your hand, I like it, or
Heidi Frost:
Doesn’t more accurately.
Karen Kehdy:
Yeah. Even also neurodiversity is the concept. It’s the ideology and concept to accept and embrace the neurological and cognitive differences. And these differences are invisible.
Shija Sapru:
Like you have been on many platforms. You I think, would be a handful of the advocates that we have and the UAE. What has changed over time since you have started talking about it?
Karen Kehdy:
Thank you Shija for the question. Yeah, indeed. When I started, you know, bringing the topic of neurodiversity in this part of the world, I want to say this part of the world, it’s it’s UAE. It was less spoken about and it wasn’t recognized much here. I have to be honest, I had a lot of ‘HUH’ moments rather than ‘AHA’ expected moments, you know? So, when I was expecting the ‘AHA’, most of them, they used to say, HUH? What are you talking about? You know. So, yeah, I had a lot of questions back then. And Why? Why neurodiversity? Why…… why you give this importance to this term or word? Why is it so important to you? It’s just the term.
It’s a language evolves and this term or this word might be replaced by any other new term. So why are you so obsessed about this term? And, honestly, the question here is can it be replaced? Because at the end of the day, neurodiversity isn’t just a buzzword. It’s much more than that. It’s created to popularize a concept, which is the concept of neurological diversity.
It’s a whole movement. It’s a diversity movement, social justice movement, human rights movement. It’s much more than a buzzword. Shija I…..we’ve met, years back I remember. What do you think has changed since then in terms of, neurodiversity awareness.
Shija Sapru:
I think, I don’t know, not much, to be precise. It’s still bare minimum of awareness. And good thing is that people have started using the term neurodiverse neurodivergent. Yes. And, neurotypical. All these words have come up even when they are not used properly. But still, I’m happy that they’ve started using it. Yeah, but see…. Not
Heidi Frost:
Saying anything. Not saying.
Shija Sapru:
Anything. No. That’s okay. But yes, these words have been there since quite a long time. Like you said, even the term neurodivergent was coined by Kassiane in 2000. Yes. I’m sure I didn’t know it in 2000 for sure.
Karen Kehdy:
So yeah. But do you think….. if I knew anything about neurodiversity in 2000. So, yeah, exactly.
Shija Sapru:
And what about you, Heidi?
Heidi Frost:
Well, I can talk forever about the grammar of it because, like, you know, the neurodiverse, neurodivergent, the same thing. But I swear I’ll talk about that when I’m supposed to. And not.
Shija Sapru:
Now.
Heidi Frost:
Because I’ve never shut up.
Karen Kehdy:
Yeah. I mean, to be honest, this is one more even reason. One more reason why we need, this podcast, why we need to clear a lot of the linguistic, confusion around the term neurodiversity. I mean, they all say what’s in a definition. It’s just a definition. Well, I’d say we need to understand, but we need to learn better if you want to support our kids or we want to support ourselves and support our community, our society, we need to learn better, about the definitions and terminologies. And at the day when we talk about neurodiversity, neurodiversity, it’s the whole shift and mindsets. It teaches us, it teaches human beings that there are multiple ways of existing on this earth. So it’s… It’s really important.
Shija Sapru:
Can you explain that multiple ways of existing.
Karen Kehdy:
Yeah. What I mean, here is like, you know, there’s multiple ways of processing information, multiple ways of, communications, multiple ways of socializing. Multiple ways of making sense of the whole world around us. And, I mean, neurodiversity, it’s very much comparable to biodiversity. Heidi mentioned that earlier. So it is actually it’s a subset of biodiversity. So the whole concept of neurodiversity is based on the idea that there’s no right or wrong brain type on neurotype. So just like, you know, biodiversity when in biodiversity there’s I mean everyone can relate to the term biodiversity. I’m sure everyone knows about biodiversity. We don’t have like a right or wrong tree, right or wrong fish just like that. We don’t have also a right or wrong neurotype. We don’t have superior neurotype. All neurotypes or all brain types are equal. And I think biodiversity is very essential for, you know, the planet. Also, neurodiversity is very necessary for a flourishing a human society. So they’re both really important.
Heidi Frost:
Yeah. And diversity is strength. And, you know, lack of diversity, is rigidity, is weakness. It’s actually very bad for you. Yeah. For, for your species. Like, that’s why we say humanity as a whole is diverse. I mean, we’re pretty good example of that here in the UAE. I think that’s why I like comparing it to culture, because it’s really easy to lean into the bio, the biology, analogy, because it’s a really good one. But cultures are one that people are, like, more intimately familiar with. And just like there’s no one right culture, there’s no one right way having a brain or of thinking either. And like, that’s why it’s important. It’s important that we as humans have multiple cultures, and it’s important that we as humans have multiple ways our brains and our bodies work. Like you might have seen this in your daily life in that friend who thinks that colors that numbers all have colors, and that seven is red and red only, and they will die on this hill, and they will absolutely fight you on what color your kids science folder is. And then, you know, you’re going to you might see it in a more extreme example, in someone who’s answering a question by quoting obscure poetry that you don’t recognize and you don’t know how to deal with that. But all of those are forms are neurodivergent, and all of that’s valuable. There’s no one right culture, no one right neuro type.
Karen Kehdy:
Yeah, I like the way you’re comparing it also to culture, which makes total sense, especially where we’re living now.
Shija Sapru:
So, yes, with the diverse culture in the UAE. Heidi, can you explain these terms? Neurotype, Neurodivergent, Neurodivergence.
Heidi Frost:
I finally get to talk about it. Yes. Yeah, I know we have too many terms. That’s okay. Neurotype just means, like, what category your brain falls into. Like, to use the cultural example, you might say I’m Egyptian, even though that’s an incomplete explanation of who you are as a person. Its just your neuro type is the category of your brain or your nervous system falls into in the broad sense. So your neuro type might be neurotypical, which means that you think more or less a lot like the people around you. A neurotype might be ADHD, meaning a person thinks very fast and might have a high degree of creativity. A person’s neurotype might be autistic. Which is about joy. But there are a lot of neurotypes. They can include Down’ s Sy…. because those are the ones people everyone already kind of associate with neurodivergence but there’s a lot of them. Yeah, that can include, like Down’s syndrome, dyslexia, the George syndrome, dyscalculia, bipolar disorder, sociopathy, anxiety, Tourette syndrome, intellectual disabilities, OCD, sensory processing disorder. And there’s a lot more than that. A neurotype can describe how you think, but it’s also how your brain works and how the connections are built. It’s both how you take in sensory information and how your brain talks to the rest of your body. And so I still think I’ll try not to talk too much about it, but. So neurodiversity versus neurodivergent. Neurodiversity refers to both neurotypical and neurodivergent people. It is a collective noun. Neurodiverse describes a system or a species. It’s collective. It is not singular. If you say you are neurodiverse, you are just grammatically wrong. It’d be like if I said I’m biodiverse. No, I’m not. I might be part of Earth’s broader biodiversity, but I am not by myself biodiverse. I have to say, I’m biologically divergent. If I want to describe myself as different from others in like a biology sense.
That’s why we say “I’m neurodivergent” and not “I’m neurodiverse”.
Karen Kehdy:
A lot of that sounds medical, right? I mean, yeah, I mean, probably many of us also heard, like, many doctors asking us, you know, your kids or probably you, you should be medically treated, but, hey, I mean, he we’re not here to talk today about the medical, model of disability. We’re here today to highlight about the social model.
Heidi Frost:
We will talk about the medical and social models in a different episode.
Karen Kehdy:
Yeah, exactly. But not today. So today we’re just highlighting that social model of disability. And we….. need to highlight when we talk about the social model of disability and the medical model of disability, we need to highlight that neurodiversity, which represents the social model of disability, it’s not here by any chance to replace the medical model. It’s in fact here to strike the balance between both, models. So there’s no….. We don’t want our audience to get confused. Oh, like you were talking about the social model or neurodiversity is just here, the movement is here to replace the medical model. So this is not true. But it’s also important to understand the concept of neurodiversity. So if you ask what is neurodiversity and what it is not, I would say neurodiversity is a social and political term. Neurodiversity is not diagnosis. Neurodiversity is not a medical or scientific term. Neurodiversity is not a synonym for the neurological differences. And, I know there’s a lot of confusion around that because many medical experts are choosing to co-opt the word neurodiversity as a diagnosis, but it is not a synonym for neurological differences. So we need to clear that because, using the word neurodiversity, it’s just like saying it encompasses both neurodivergence and neurotypical. So it’s never meant to be a diagnosis. But yes, there are some advocates, some medical professionals, they’re choosing to use it interchangeably with neurodivergent or neurodiverse. But we just also we wanted our audience to understand better the terminologies behind the words and the meaning of each word.
Shija Sapru:
Could you talk about the neurodiversity movement a little more?
Karen Kehdy:
The neurodiversity movement is basically created by, autistic individuals from the autistic community. Like initially it was created by individuals from the autistic community, that felt oppressed, marginalized back then. And they felt that there’s a need to create a movement to advocate for their rights. The, you know, the rights of neuro minority that are marginalized back then and unfortunately, still marginalized. Yeah. So, it’s a social justice movement. It’s more like a human rights movement to advocate for systematic changes, to advocate for accommodations, better services for the neuro minority or neurodivergents, and yeah, so the movement is basically it’s a social justice movement to advocate for the rights of neurodivergents and, you know, till now, neurodivergents and even parents of neurodivergents are still fighting for the same rights.
They’re still fighting for equal access to education, equal access to the workplace. Still fighting for ableism, fighting ableism at every level in our society. So this movement is still needed till now.
Shija Sapru:
So it’s just like racism and all these kind of.
Karen Kehdy:
Yeah, pretty much everything with’ ISM’, racism, everything with ‘ism’ you can think of.
Shija Sapru:
And here it would be looking like separating the neurotypicals, the neurodivergent in classrooms, for example, not having the right set of accommodations and accessibility in place. Would you see that?
Karen Kehdy:
Yeah. Yeah.
Shija Sapru:
But can people really fight this kind of ‘Ableism’?
Karen Kehdy:
That’s it’s a huge I mean, it’s a big topic. I mean, we would probably need a whole episode to talk about this fight.
Heidi Frost:
Any kind of oppression.
Karen Kehdy:
Yeah.
Heidi Frost:
But does it work? I don’t know, that’s a different question.
Karen Kehdy:
Yeah, but I’d say I’d say honestly, like fighting the ableism of probably want to choose a more friendly, friendlier word like being anti ableist. We should probably start within ourselves. I mean, each and every one of us have sort of internalized ‘Ableism’, and I think we should start within ourselves and we should start focusing more on shifting those, deficit-based perspective, moving away from these deficit-based perspective towards more strength-based, mindset.
And we should advocate for systematic changes, you know, and try to learn from the life experience, neurodivergent life experiences, try to amplify their voices. And I think also language matters. I, I really think language matters. We should move away from the deficit based language to more strength based language, more neuro-affirming language. I mean, this is what is neurodiversity. It’s just moving away from the deficit-based model, from this whole broken idea of being, you know, different to a strength-based model focusing on the strength. And when we say Shija’s here focusing on strength, we’re not by any chance, dismissing the struggles or the disabilities, or the co-occurring conditions that that come along with neurodivergence. Both at the same. Exactly.
Heidi Frost:
Yeah. And for those who don’t know, internalized ableism is the assumption you don’t realize you have about either disabled people or about ability and inability in yourself, in your family. So a good example of that would be like assuming you’re a bad person or feeling like you’re a bad person if you’re not productive at all times of the day, or feeling guilty when you rest.
It can also be that feeling of pity you have when you just see a disabled person out living their lives and you feel grateful that you’re not disabled like they are. And it’s not bad, strictly speaking, to like, be grateful for your body to ‘be able’ like it’s not, that’s not the bad part. It’s the pity that comes immediately afterwards. It’s the knock on effect from that. Because like to bring it back to culture, which I love to do. You can be entirely grateful that you are Canadian, for example. But if you look at someone who’s not Canadian and you feel pity for them that they’re not Canadian, yeah. That’s prejudice. That’s where it tips from……like, it’s fine to be proud of who you are and to actual ‘ism’.
Karen Kehdy:
Another ‘ism’.
Heidi Frost:
Yeah………. Label all of the ‘ism’ list them all right here. So when you see a disabled person, you don’t have to feel guilty that you’re glad you’re abled. But, like, challenging your internal ableism, your internalized ableism would be like when you start to feel pity for them, you can ask yourself like, well, I could still become disabled because anyone can at any time.
I could be like, they are. What would I want if I were just out living my life while I’m disabled? When I see that person, what should I do? I think that’s just a good place to start with changing that for yourself.
Karen Kehdy:
Yeah, I totally agree. And when you talk about that, I, I thinking now about the incentivization like, which really bothers me, you know, when, you know, when adults see other adults, disabled adults, they will start with the infantilization, which is kind of hurtful and ableist, and it bothers me. But they just it’s unconsciously, you know, they do it without maybe it’s out of they don’t know how harmful it is, but it is harmful and ableist. And now we come to the topic of, I think, neuro affirming approaches or new affirming practices.
Heidi Frost:
Which we’re also going to do a whole episode on!
Karen Kehdy:
Exactly. Yeah. So what is neuro affirming approaches? It’s a set of approaches and practices basically that accepts and embrace the different brain wiring, the different brain types, different neuro types. It’s also it’s pretty much similar to the culturally, culturally, you know, affirming practices. Because just like we have, as you said earlier, Heidi, just like you mentioned that there’s no like we should embrace different culture differences in the cultures. We accept and embrace the differences in culture. The same way we should also accept and embrace differences in neurotypes. Just like there’s no one superior culture, like there’s no one right culture or wrong culture that just different cultures. I think it’s the same way for neurotypes or brain-types. We don’t have one superior neurotype. Yeah, they’re all equal. It’s not like the neuro dive…, you know, neuro typicality as a neurotype, it’s the right neurotype. Whereas autism, for example, is the wrong neurotype. We don’t have that. It’s just like the cultural is pretty much like the culture. So we have to accept them and we have to embrace them. Yeah. So on.
Heidi Frost:
Yeah. And that’s something that I think we here in the UAE do really well with multicultural. Yes. Cultural affirming practices in our schools and in just our daily lives for the most part. And it can be really hard, like, if you’re, if you’re not used to that and you’re coming from a monocultural country or school system, it can be really hard to see where your assumptions are. Like where, where is the assumption that my culture is best baked into my school system? That can be difficult to spot. You have to ask yourself questions like, so why is eye contact included in my teaching rubric for PowerPoint presentations? Because that’s both cultural and related. You know, eye contact is both cultural and, neurotype dependent. And things like, you know, if I, if I were to remove voice volume from my grading system for my kids, my teacher, my students projects, what can I replace it with? What was I trying to measure? And I think that’s a really good way to just start trying to find where are my ableist assumptions in my school system, in my grading, in my, you know, daily life?
Shija Sapru:
Yeah, yeah. So it’s like not to make things easy or nice. The whole idea is like a value addition to the society. Yeah. And strengthening our schools, workplace communities. So it isn’t just schools that could kind of benefit from these kind of, value addition. I think everywhere, even workplaces, wherever there are like despite the challenges, like guess with the neurological differences, everything could be a strength to the entire system in place..
Heidi Frost:
Exactly. And it’s definitely something we’re good at here in the UAE with culture, where, you know, and we want it to we want to see that expanded into, you know, neuro affirming practices. And that in your workplace that might look like talking to HR about timing policies, because a good cultural example here in our in the UAE is almost all the companies here have a mix of employees who are coming from a time is money culture and a relationship is money culture, because those are highly conflicting ideas about how you deal with your boss, your coworkers, deadlines, timing, and you, you know, it might be important to have HR to remove some of your timing based evaluations for employees, or even just timing qualities altogether, because, you know, these companies aren’t sitting here going, oh, we are doing such a nice thing for our poor unfortunate souls of wasta-using employees who might have to spend a lot of time with VIPs. Oh poor them, we’re being so nice that we’re not holding them to our timing policies.
Heidi Frost:
They’re not doing that. They’re looking at, oh, hey, they’re really good at dealing with our VIPs. We like the value they’re bringing to our company, even though they occasionally blow off deadlines or, you know, timing expectations or miss less important meetings to spend time with the VIP. And that that extends into neuro affirming practices. You can have that. You can you don’t have to do that just for culture. You can do that for neurotypes.
Karen Kehdy:
Yeah. I mean, our understanding of this topic, I think it’s really important because it paves the way for, better support. But the services and, I mean, they ask, why neurodiversity? Why neurodiversity awareness? I mean, neurodiversity….., advocating for neurodiversity awareness. It’s much more than, you know, understanding the neurological differences or it’s much more than advocating for services for better accommodations, but it’s basically advocating for systematic changes. And these changes will benefit everyone in the society. So when we advocate for systematic changes, because, you know, awareness brings changes and these changes will benefit everyone, not.
Heidi Frost:
Rising tide lifts.
Karen Kehdy:
yeah…. and it will benefit everyone, not only neurodivergents but also neurotypicals. So the whole neurodiverse population, so it’s really important. And like now, for example, we’re in Dubai, Dubai is famous for malls. Just an example about the malls. Let’s say one of the malls decided, they will have like, for example, 2 or 3 hours, quiet hours per day, or maybe, let’s say per week, these two, three quiet hours, which has less, let’s say bright lights, less sounds, less people. Let’s have more calm spaces. So can we imagine if this happened? How many people would benefit from that? Because at the end of the day, you know, okay, neurodivergent. And when I say people, I mean everyone, the neurodiverse individuals because neurotypicals and neurodivergents, they both will benefit from this. I mean, yes, neurotypicals do have also sensory overwhelm. They might be also overwhelmed by lights or by noises. So they will benefit from this. I can only imagine if this happened. How many people will start going shopping? And then just rather than online shopping, they will start going to the mall, actually buying their groceries or shopping for the kids. So it makes it….. this adjustment can make a huge difference for many people and I just want to hear, highlight that. Okay. I am not comparing, by any chance, the sensory experience of neurodivergents to the sensory experience of neurotypicals, because it’s not the same. Yes, neurotypicals do have sensory overwhelm, but it’s definitely not the same as neurodivergent experiences because it’s definitely not the same intensity, not for the same reasons. I mean, neurotypicals, maybe they had a headache or they didn’t sleep the day before. So when they go to the mall, they will be really overwhelmed with noises. But when with like neurodivergents, the intensity, it’s different, it’s painful and it’s every single time and the pain, it’s the whole intensity is different. Just want to make sure that we don’t have any misunderstanding. Yeah, yeah.
Heidi Frost:
Thank God for hearing loss. I no longer have to deal with the audio assault.
Karen Kehdy:
I mean, here in MENA, just like I think if any, like any other country, the whole neurodiversity awareness is growing. It’s still growing. Okay, there’s a lot of challenges that are a lot of roadblocks on the way. Stigma. But, it’s still growing, and, it’s not easy. You know, it’s never easy. Change is never easy. And I think it would take really time for the, you know, people to realize the power of neurodiversity. So it will take time. But to be honest, I’m really grateful to be here in Dubai, raising my kids in Dubai because I think that we’re….. we’re now sowing the seeds. I know that there’s a lot of challenges, but also, I think, we are sowing the seeds now. There are a lot of initiatives happening. There are a lot of advocates, parents, professionals that they are trying to reflect more on their approaches and trying to adapt their approaches to neurodiversity values. And this is really important, and it’s very insightful to see this whole process of learning and unlearning. It’s really inspiring. But one example is, for example, now there’s a MENA Congress which is meant to be for rare diseases, but they have dedicated a whole, section for neurodiversity, which is really also important. And I think we should see more and more of these, conferences and events focusing on, neurodiversity and neuro-affirming approaches. It’s much needed in our community.
Shija Sapru:
Small steps, big impact.
References:
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