What can an ‘autistic’ Barbie represent when neurodivergence has no single look?

This is InFocus. The Hindus, current affairs, podcast. This is a great conversation starter. This is a great point to break some of those myths around autistic people and to make some of these aspects of autistic people more acceptable in society. If you've met one autistic person, you've met one autistic person. Now this is a popular saying within the community. So, when Mattel launched its latest Barbie doll, which is an autistic Barbie doll, there's been a lot of conversation. It may have looked at first glance like just another addition to their range, but at a closer look, it may have something more to show you. It's the fourth doll in Mattel's inclusive range and it's been developed in collaboration with the US-based Autistic Self-Advocacy Network. The company says every child deserves to see themselves in Barbie, but what does that actually mean when we're talking about autism representation and for those on the spectrum? In India, where the doll has just launched, the question becomes even more layered. Does this count as meaningful step towards representation or is it visibility without infrastructure and support? Can a single toy capture the diversity of the spectrum and what kind of understanding or othering might that create? On all this and more, we're speaking with Dr. Nidhi Singhal, Director of Research and Training at Action for Autism National Centre. This is a conversation about dolls, yes, but also about awareness, accommodation, and expanding representation after it arrives in a box with a price tag. Thank you Dr. Nidhi for joining us today. Let's get right into it and see where autism Barbie's launch in India plays out for neurodiversity representation. Thank you for joining the Hindu today. Thank you for having me, Vibha. So, could you walk us through why this new Barbie doll launch is different, say, than their other usual doll ranges? So, Vibha, let's start by acknowledging that this is another first Barbie disabled Barbie that Mattel has launched, right? There have been other conditions that have been represented as like a blind Barbie and so on. The nice thing about having an autistic Barbie is all the accessories that it comes with. Of course, like the fidget spinner or the AC device, the headphones, but also the ability to flap or having a talking specifically about ideas or eye contact, right? Which is different for autistic people. So, I think a lot of autistic people are seeing the represent themselves being represented in this new Barbie. And I think that's a wonderful thing really because we are talking about differences and we are talking about making things acceptable, right? Making these differences acceptable. So, that's a wonderful thing. In line with this, there's this phrase in the Mattel's marketing which says that every child deserves to see themselves in Barbie. I hope that all parts of the spectrum feel included in the conversation. I want them to feel hopeful. I want them to feel like they matter. And this is almost like what you're saying, right? Like finding representation, finding something you relate to in a doll or something so intrinsic to a childhood experience counts. So, what does it actually mean for an autistic child person to see themselves represented in a toy? And I'm speaking about this in terms of someone who's been diagnosed and is seeking necessary support for it. I think all children, not just children, I think everybody, all of us enjoy being represented, right? Seeing ourselves or a part of ourselves in any kind of, whether it's a doll or social media or movies or books, we enjoy the representation. And I think we're seeing all of that more and more in the media as well. But for autistic people, I think specifically autistic people, when they're differences, and especially because it's not always very visible, some of these differences are not considered cool, right? And I'm cool in air courts, right? So, the words that are often used for them are like weird or strange. It's always with a negative connotation. So, having a representation, which is considered cool and which is considered really the in thing, it's always nice. So, I think from that perspective, when we think about all the autistic people who are going to feel themselves represented, it is finally in the light of, you know, that this is great, this is terrific. And I think about also our, you know, our conversations, especially in the Indian context. I think about all the conversations that we have, people who, you know, when we think about eye contact, what are the myths that really exist? What are the common beliefs that exist? We are taught that somebody is not making eye contact. So, what does that mean? They're probably shifty or that they're distrustful. They have something to hide, right? Now, these are some of the common myths that go around in the Indian context, especially around eye contact. Now, having this conversation, having this script flipped is a fabulous thing. Where we're saying they're okay, hey, you know, autistic people do not make eye contact and that's fine too. So, I think from that perspective, it's an opportunity to initiate a new dialogue. And of course, it's up to us, you know, people in the disability sector, people who are not part of Mattel, but to continue this conversation, to talk about differences as such, beyond the launch of the autistic Barbie. So, now, coming to this specific design choices in this Barbie, could you tell me what the specific ones mean to an autistic person? For example, we can start with everyone's been talking about the eye contact bit of it. It's indirect. And I noticed that the eye gaze is a little indirect. This one's making more eye contact. And this one isn't, isn't making direct eye contact, because as people with autism often struggle with eye contact, and now something that was harder for me growing up. So, what does it exactly mean and how is it representation? Now, when for autistic people, many, many autistic people are talk about how difficult it is for them to make direct eye contact, because it interferes with their thinking process, right, with the way they are processing words. And what that really means is that when autistic people are in conversation with anybody, they process the information, the words, their thoughts, better and respond better. If they are looking at a blank sort of surface, versus when they're looking in somebody's eyes, which can be very distracting for me. While this is in the context of autistic people, this is extremely relevant. It is not true for all autistic people. But having said that, what are the myths that are associated with, at least in the Indian context, how do we understand indirect eye contact, or how do we understand people who do not make eye contact, a direct eye contact, how do we consider them? The common myth is around that they are distrustful, that they have something to hide, they lack confidence, that these are people who are shifty, right. So, when we think about it from that context, the myths that are that currently prevail in the Indian context, we recognize that this is a great point to actually or a great conversation starter, to talk about how some of these things are not relevant or may not be applicable to autistic people. So, I think that in that respect, this is a great conversation starter. So, we do not, a lot of autistic people face difficulties in schools, say for example, because they are not talking to authorities or not considered to be talking to authorities in appropriate ways. I mean, in workplaces adults are constantly autistic adults, are constantly belittled, if I may, right, for not being, not making eye contact and having a conversation in the ways that neurotypical have described it. Coming to the other aspects, such as the tech accessories in the product, for example, there's noise cancelling headphones, a fidget spinner, and even like an augmentative alternate communication, it's an AAC tablet. So, with these aspects, how do they play out, could you elaborate on that? So, again, if we have to recognize that not all autistic people feel represented through this doll, right? A lot, but a lot of people do. So, for a lot of autistic people, the sounds in the environment can be extremely overwhelming, right? And these are common day sounds that a lot of non-autistic people do not face any trouble with. But these, and these could be just sounds of the traffic, sounds of, you know, the kitchen appliances, sounds of, you know, just the, just people talking in a room. And that can be extremely disturbing into the extent that it can create a really like a mental shutdown. So, the brain stops working. So, just having a simple device like a headphone or earphones can help autistic people not just thrive in the environment, but also have a significantly better mental health and therefore better quality of life. So, similarly like fidget spinners and not just for autistic people, but a lot of people with ADHD as well. A lot of people who need that kind of movement in their body, right? Their bodies are craving this movement. These are all things that are allowed for, you know, by, I mean, by representing it in a doll. It is, it's almost like making space for it in the conversations that we can have. But of course, it will impact only if these are translated into actionables in a policy is in our services that we have in India. But the fact that this is something that can be spoken about now is wonderful, I think. In terms of all the aspects you mentioned, there's one common theme that I picked up on is the fact that you mentioned repeatedly that this is not for to represent all autistic people. Now, is that a very important aspect to focus on by talking about this in the mainstream? We have to remember that autism is a very large spectrum. And not all people are going to be able to, I mean, I think a Stephen Shaw on autistic self advocate from the US. He, I think, had mentioned that, you know, when, you know, one person with autism, you know, one person with autism. Baker, autism is represented is experienced by different people in very, very different ways. So without a doubt, there will be this, this one doll cannot be representative of a huge variety of spectrum. The huge variety that exists in the autism spectrum, which is okay, right, because they can be more variations around it. I know that a lot of autistic people are saying that it would be great to have an accessory pack. So, you know, when I say accessory pack with other things that might be relevant for themselves so that they can make the doll more representative for themselves. So, for example, what I mean by that is not everybody is going to enjoy fidget spinners, right. Not everybody needs ACs or the so AC device would be relevant for some people and not so relevant for other people. The, the clothes that have been created, which are sensorially, like, you know, supposed to be a lion sensory friendly clothes. Now a set of loose clothes, short sleeves that lose dress is a resident, hugely with a lot of people. But at the same time, there are a lot of autistic people, I know, who will not like something as loses and flowing like that. They like something which is more weighted, more fitting, more tight, because that's the kind of pressure or the kind of need that their body has. But, but having said that it does not take away from, you know, what, what Mattel has introduced. But I think what it, what it highlights is a need for more clothes, more dresses that might be sensory friendly or different types of sensory dresses. They could definitely be like an like an accessory pack alongside what they have currently introduced with. Got it. Actually, a very interesting point that it has to fit each one in even in terms of representation. So, I think expanding what is available is like a next step to consider it. Once everyone knows that, oh, this is a concept, then there's always space to build on it. See, also, if they had just introduced it, like when you think about it, other than the fact that it has hands which can flap. So, the hands or the wrists have been created in a certain way. Everything else is just an accessory. But if they had just introduced this as an accessory pack, we wouldn't be having this conversation around autistic Barbie. So, I'm very happy that they have created an autistic Barbie. And talked about it out, it's just a product for them, it means more sales for them. But it is such an important move for us in the disability sector, in the autism sector. Because there are a lot of people, both boys and girls who are feeling like, okay, this is what I resonate with. And I think, you know, we're seeing the world wide, right? We're seeing black sanctas around. We're seeing women of color around. We're seeing representation, you know, in terms of sizes, we're seeing representation in terms of even hair quality in addition to color. So, we need all of that. And the Indian context, we need people represented from various, you know, indigenous tribes as well, right? So, Adi Vasis need to be represented as much as the urban Indian woman. With Mattel, they also set in their communication, like you said, it is part of their campaign at the end and it is for their range overall. But they said that they did collaborate with the autistic self-advocacy network, which is a US-based network. And for they spoke with them for over 18 months and collaborated to bring out this specific doll that's out. So, spending that time to understand a certain level of rep to represent something, how much does it play a role? Do you see it in terms of the design choices or the language they've used, the kind of campaign there is around it on social media? Do you see it translating and how that collaboration is important? See, the fact that they were collaborating on it, I think, is just wonderful. Because it's such a good thing that they're not looking out for professionals or parents, but reaching out to self-advocates and the network for that, right? And I think that's fabulous. And like I said, it will never be a representation, any one doll can not be a representation of the entire sector, right, or of, you know, millions and millions of people around the world. But the collaborative effort and making sure that the voice of autistic people are represented and authentically represented, like, you know, it wasn't, it's some from the way. I mean, I've been reading the, on listening to the interviews and podcasts, it sounds like there has been a genuine collaboration, right, where people have been closely involved. And I think that's what matters eventually. I mean, and we're seeing that, right, we're seeing, even in the Indian movies now, like we had, we've had people where, where, autistic people are representing or disabled people are, are portraying the character of being disabled. We do not have a enabled-bodied person, you know, pretending to be a disabled person. And that's the kind of the authenticity that brings, that the authenticity that comes with, with that is unparalleled really. And the fact that this is such a great nod to the fact that, you know, that voices of autistic people matter. And in bringing that same collaboration to India, I think it's partnering with India Autism Center. And it is even the communication says that a portion of the proceeds will go towards autism awareness initiatives. Now, is, and another interesting fact that I read was that the Barbie doll itself is modeled on an Indian woman of color. Now, this again is very much rooted in a Western perspective of looking at it, that representation is needed because awareness is less in Southeast Asian countries, and which is why it's a move towards that. Now, all of that comes as part of the communication campaign, but on ground because you're involved in research and training, do you see this making a difference in terms of, again, like you said, conversation starter? See, you know, having all, like, how do I say this? So this is just the launch and the publicity around it is just one part of the whole story, right? The conversation has begun. Now, for Mattel, for everybody else, whether it is, really, whether it is a product, whether it is, you know, they're invested in autism, that's not the point, really not the point, but it is really up to us, the people in India now to take the conversation further, right? The owners really lies on us now. Now, what tends to happen in, and I'm not saying this happens in India, I think this is globally, what tends to happen is we have, we have a lot of conversations around specific events. So right now, this dollar's launch, we'll have all of this coverage for about the week, 10 days, maybe a month, then there will be a world autism awareness day in April, we'll have conversations around that lots of events around that. Then we'll wait for the world disability day or international disability day to have another set of conversations. But the reality is that for autistic people, for their families, this is a reality every single day. And until unless we meet this conversations, unless and until we make sure that these conversations are happening on a regular basis, it will really not amount to anything, because this event will just come and go as, you know, I mean, Mattel will publicize it, until we'll do whatever they need to do to make sure that these are profits that they are the thing, that's a product for them. But it's up to us because it's for our, it's our lives that we are involved with, that we have to take these conversations further, right? The other thing that we also have to think about is that, like I said, that these are conversations we could be interpreting the bar, be in a hundred different ways. But what is it that we are taking from there into our policies, into our services, into our, into our, into our, really the attitudes. So, from a doll's perspective or a child's perspective, you know, not making direct eye contact is fine, hand flapping is great, it's all good. But if we do not have, we do not translate this into sensitized conversations, the parents are still going to dissuade their children to play with somebody who looks different. Right? And so, the doll would not have served any more purpose, until unless it is supplemented and complemented by concrete action. And, you know, what I'm saying is, this is a great way to bring this conversation into every home, right? Because the parents are getting sensitized, you know, it's a great way. But it is not all of it and we can't, we can't, we can't imagine it to be, any more than a starting point for some of these conversations. Sure, like, as you said, it then needs to be a distinction between what counts of meaningful representation and what's essentially just good PR, right? I think that difference is important to understand. And then the focus will also come on the various aspects where this could be a conversation starter. For example, in India, a diagnosis itself is so less, right? So then the identification and incorrect interventions at different stages also becomes very important to talk about. Even this doll, for example, which is in context right now, is marketed for ages three and up. But when Indian children itself, there's such a lag in the kind of interventions that come in. How is that tackled usually with this doll aside as well? How are the intervention techniques being adopted? So the good thing is that at least in metro cities, metropolitan cities, in metros, these are, you know, we are meeting kids even at 18 months, 20 months and kids are being identified as early as that, right? But of course, it's a very small, very niche population who has access to all those professionals and who have access to some of those services. So keeping the doll aside, like you said, the doll really has very little to do with diagnosis that are interventions. The doll will, will make sure or can has the potential to have, to make, to have conversations around that it's okay to be autistic. That's the limb, that's the extent of it, right? It is no more than that. But everything else, the interventions, the services, we're seeing a lot of gains in the past, even in the past decade or so. The autism sector in India has boomed in the sense of awareness in the sense of more, more services in the sense of even not just early intervention and not just early diagnosis, but also very, very late identified autistic people. So we are meeting people who are getting identified in the 60s and the 70s because, you know, when they were kids, there was nothing that was available. But now with all of this, I can traction on social media, more and more people are being identified and recognizing that the experience is a best described, their experiences are best explained by autism or a diagnosis of autism. So, you know, there is a lot of traction there. Are the services enough? Of course not. Are the training opportunities enough in India and not at all, right? So, there is many, many, there are many, many steps forward that we need to take. We are talking about really like I started by saying only the metropolitan cities and, you know, as we go into the interiors, the situation remains pretty much the same. But I think one of the most important aspects that need to be addressed is the, the, the, the binaries of diagnosis of autism. So either people think about it as, oh, this person is autistic, so not capable of doing anything and we undermine their abilities. Or people think of, or people think of autistic people as savants, so they must be fabulous at something and you're looking and constantly trying to explore, what are you going to do that? So, the scope of remaining human, the scope of staying with, you know, like an average person like you and me, the scope of, or the, even the ability to be a thinker and somebody who can express not the via words, not by spoken language, but via AACs, those are aspects that are sort of missed out. And I'm hoping that, you know, that, that some of these attitudes can be better addressed, or, you know, at least exemplified via, you know, representations like having, having a Barbie doll. Yeah, got it. So another thing that you mentioned and I thought was that, Mattel collaborated with the advocacy network, but you also mentioned that it was a better move than collaborating or speaking with say the families of autistic children or people. So why did you make that distinction, is there anything specific to it, or is it still about the notion that families are still so far away from familiarizing or processing these things that they are going to only be a worse to that idea and often in denial maybe. So I know I'm not seeing any of those things actually with, for the longest time, you know, the autistic people or the autistic voices have been, you know, the Mohl movement has been kind of spearheaded by parents and more power to them. But at the same time, you know, it's a little bit like this that if I wanted to ask you about you with, would you rather speak to you or speak to your families. It's the same thing, we have for a longest time, we thought that autistic people were not speaking, they did not have the ability to speak, they did not have the ability to think, even when they were telling us differently, right. But a lot of neurotypical people as professionals, we were not, we were not ready to listen or believe them. But now in the last, I think in the last decade or so, we are, we have turned, you know, I think there are the non-autistic world has opened their minds and saying, oh, you know, people are saying something, let's listen to them. Everything that we know today about autism is best understood by autistic people, you know, when been spoken about through autistic people. And there's no reason why we should not be listening to them. So when they have a voice in their people who are telling us what their experiences are, you know, it's, it makes sense to listen to them, right. Why shouldn't we listen to them. There is no, I can't think of one good reason about why we shouldn't listen to them. So we've been talking much about the awareness and the perception of said campaigns or programs in place, right. But talking about certain policies or even the perception for an autistic person before they fully accept it or, you know, take it into their stride to thrive like you said, where is that exposure to inculcating say empathy or understanding and what more can be done in that sense. And this is in context to India. You know, one of the most common myths around autism is that people, autistic people do not have empathy or that they do not feel things, which is absolutely incorrect. If anything, many autistic people, because of their sensory processing, their sensory sensitivities are hyper empathetic, which means that they feel things so much more strongly and closely that it can, it can sometimes be overwhelming. So the one thing that we want to recognize is that this is a myth that people are not empathetic or people are autistic people are not empathetic or that they need exposure. In whatever ways to be more empathetic when what they actually need or what what what a lot of autistic people benefit from is sort of an understanding about how to regulate their body in terms of their emotion. So why when I feel so overwhelmed what is it that I can do right learning about that or just support a, you know, that I'm feeling a certain way. So how is it or what is it that I can do in terms of expressing it to people. One of the things that a lot of autistic people have said is that they do not, they do not feel like they are at a disadvantage for, they are, they have any disadvantages because of being autistic. They are pretty happy being autistic. What the disadvantages coming from are the rules or the norms that have been superimposed, you know, on this, in this environment. All they're expecting and hoping like everybody else is a little bit more of kindness and space to be themselves. So it is not the autism or the that puts them at a disadvantage. It is people's attitudes and their unreasonable expectations that kind of gets in the way just to give you a couple of examples. Like, you know, a lot of autistic people, they will say what they mean, they take things very, very seriously and there are promises to be made, they value, they value being organized. Now all of these are great skills to have, these are great virtues to have, these are strengths for, these can be strengths for everybody, right. We want to be organized, we want to be planned. So if, so being planned is not a disadvantage, but what puts autistic people at a disadvantage is the fact that when they're working around or working with people who are very, very disorganized or who are not very planned, that is what puts them to a disadvantage. So it's not autism that's putting them to it at a disadvantage or, you know, making it difficult for them. Similarly, when I'm making, you know, when I'm making false promises, when I'm saying one set of things that means something else. And you know how a lot of neuro-typical people all of us, we kind of make things like, yeah, yeah, we'll catch up someday, you know, let's catch up soon. But these are just things that we just say in there, we don't really mean it or we do not have a definite plan. So we are saying things which we don't mean. And I'm not saying that's a good thing or a bad thing, but it's statements like these when people are saying one set of things, but they mean something else. You know, when we are being politically correct or when we are being diplomatic, these are the kind of nuances that throw people or a lot of autistic people off, because that's when they don't know. And they're talking about when autistic people are talking about subjects of their interests, they're talking from facts, they're talking to trivia, they're talking about work, they're fabulous at it, but it's the gossips that can throw people off. So these are all, you know, things that really, I don't think there is any disadvantage to among those things, but it is more to do with the, with the norms really or the standards that have been imposed by neuro-typical people as the norm for being in this world. And that is what is hard or makes things hard for us to write undisturbed. So again, all of these points to yes, everything is a starting point for awareness, but nothing can be really done unless there is infrastructure, support and policy in place. I think that is a common theme that we've touched upon. On that front itself, could you tell me a little more on, is there something different say five years ago, what else is being done now? So, but I think one of the brilliant things that will happen at least in the Indian context is just the fact that there are a lot of in this past decade, you know, a lot of self advocates have come up. So what I mean by that is people, I mean a decade ago, they were hardly any autistic people who were talking in public or who were ready to talk about their lives in public because of just the stigma that was attached to it. So even though they had experiences to share, you know, they were always fearful of how their extended family is going to feel or how their place of work or their school, you know, are they going to be put at a disadvantage because of that. But the fact now that more and more people feel comfortable talking about their experiences, whether it is at workplace, whether it is in the social media. I think that is such a significant shift and that's wonderful. The other wonderful thing that has come up is about how the non-speaking autistic group is now also being represented in different ways. So, whether it is, you know, their authors who are writing, you know, non-speaking autistic people have authored a book. So whether it is about that, whether it is them being represented at different conferences or as trainers and our as faculties in different places. I think those are the other things that have that are fabulous. It's fabulous to see that happening. But of course, it is just the tip of the iceberg. There's a lot more that needs to be done. This needs to be promoted many, many folds. But the fact that there is a little less stigma around some of these things is wonderful. Now, I'm going to ask you about, say for example, many companies follow suit, many people get into the space of promoting this conversation starter, doll or any other form. What would you say are one or two things that ugly company who are doing this for their own campaigns, sure, but can keep in mind while putting such campaigns with the language or the aspect they need to focus more on. See, I think for me there is this one thing that would be lovely to, you know, lovely if it was promoted. And I could say whether it is a doll or a toy or anything else. And which is that if we can, and if the message that we, I mean, I personally believe in and would be lovely to, the message that I believe in and would be lovely to kind of send across. Would be that neurotypicality is just a small slice of human diversity. So to make sure that it is represented that, you know, what we call later pickle or what we refer to as neuro diversity or neuro is the rule of life. And that's what kind of makes us stronger. That's what brings us together. It complements each other, you know, as a society, as a group, as human beings that comes together. So the message could, if the message could be about acknowledging, accepting, appreciating, embracing, whatever word we use. But to say that yes, neurodiversity is the norm, neurotypicality is not, neurotypicality is not the standard or the way of, or the way of a life. And that is what would be lovely to see. So whether it is packaged as a group of friends where neurotypical or just one small form, you know, but human diversity is just celebrated and, you know, exemplified in every which is, I think that is what would be really lovely. That's a great point. And I think on that note, we can actually, you know, close this conversation on this being a conversation starter itself. And there's long ways to go before we achieve representation and the right amount of awareness needed, I think. Thank you so much, Dr. Nudi, for joining me today. Thank you. Thank you. Thank you, Dr. Thank you, Dr. Thank you, Dr. Nudi, for joining me today.