How many participants have you got?

It’s happened to me several times recently that when telling someone about my research project (I’m doing an ethnographic study on the emotional landscapes of autistic adults in the UK), I was confronted with: “oh cool… so how many participants have you got?” It’s a relevant question, of course, both fair and valid, which is exactly what makes it so difficult to address. Because it puts me in a position where I have to explain something that to me is very fundamental, but to others often sounds quite odd; that the number of my “research participants” is (a) undetermined and (b) not particularly important.

The simple answer is that social anthropology just doesn’t really work like that. We don’t normally count our participants (well alright, sometimes we do, but for different purposes such as getting grant money etc.) We don’t really even define the people contributing to our study as ‘participants’ in the first place – instead they would be our interlocutors, collaborators, informants. This is more than semantics – this represents a very different relationship between researcher and contributor than that which is imagined when we speak of ‘research participants’. Our interlocutors are those people who have very kindly agreed to let us in to their homes, to become part of their communities, and to join their activities so that we could understand them better. So to be honest, if anyone is ‘participating’ it’s not them; it’s us.

Also our research setting has no defined space or structure; you don’t get to invite someone to your lab at 4pm to do an experiment, or to get people to answer your questionnaires. Data is generated much more spontaneously than that, After all, every conversation we have, however short, is data. Being taught how to make a surfboard is data. Having a pint of beer is data. So in this highly unstructured research environment, who would even count as a research participant?

In my case, I suppose the answer would be anyone who has ever enlightened me in any way about my research topic. People I interviewed, of course, but also people I exchanged emails with, people I chatted with at social gatherings, people who wrote books, blogs, or information brochures… In other words, hundreds and hundreds of people. But I don’t think that’s what the person asking me about my study meant. I suppose she was thinking more in terms of an exact number. A sample size. An ‘n’.

But like I said, I don’t have a sample size. I can’t really even say I have a sample. I realize to some people this very statement is quite mind-blowing. “No sample? So how can you tell if your study is at all representative?”

And that’s just the thing: Representativity works differently in social anthropology. In general, we just don’t quite buy into that whole idea that the more people you talk to, the more likely you are to capture that big whole. I’ll try and explain. Let’s say I did a study on 1,000 people from – I don’t know – let’s say Crete. And I might have found that, for example, 68% of Cretans support, say, controlled immigration. That’s a useful finding in many ways. But as a social anthropologist, I’m not particularly interested in this figure. Instead, I’m much more interested in learning about the variety of opinions, the plurality of voices, the disagreement, the dilemmas, the change of heart. I want to understand how different people interpret the very meaning of the concept of immigration; what connotations and emotions does it raise in them? does it arouse fear? Uncertainty? Hope? When thinking about immigration, does one look back into the past, or forward into the future? Does one see immigration as a moral issue? An economic issue? An identity issue? And at what point, and under what conditions, can ‘one of them’ finally become ‘one of us’?

The thing is that there are hundreds of thousands of people living in Crete. And each person is unique. Each person has their own singular, complex, intricate and subtle reasons for doing what they do, saying what they say, and thinking what they think. In trying to capture all those differences, a sample of 1000 is just as inadequate as a sample of 3.

And yet there are similarities, of course; Cretans all live on the same island, speak the same language, are subjected to the same laws, and are governed by the same people and institutions. Understanding the delicate and complicated mechanism by which those similarities have affected each of them individually would provide the very best answers, I think, on who Cretans actually are as a group. And to understand this process, this mechanism, you don’t need to talk to 1000 people. Potentially, you could do that by only talking to 10, as long as you’re taking your good time and asking the right questions.

I’m not saying large scale studies are inevitably blind to nuance. I don’t mean to be making such an overarching generalization. What I am saying, however, is that when nuance is all what you care about, you tend to give much less regard to quantity, and much more attention to quality. When every new conversation I have with the same person consistently reveals new insights, new understandings, new knowledge; I’m absolutely in no rush to go looking for someone else to talk to.

Which leads me back to my own study. Studies on autism often have dozens, hundreds, and even thousands of participants. And yet there are millions of autistic people out there. Can a study that considers the genetic / brain imaging / social-economic data of 10,000 autistic people contribute to our understanding of what autism is? Of course it can. But can it help us understand what being autistic is like? Can it help us understand what autism means to the very people who are themselves autistic? Not really, no. However an extremely well-told, sensitive and nuanced study of even just one autistic person can do exactly that. Just think of Temple Grandin, Dawn Prince-Hughes, or any other autistic author who has written so beautifully about their own lives, expanding our understanding in ways that large studies never did.

As I go about my study, day in day out, trying to understand as much as I can about what being autistic is like, I find it most useful to focus on those highly specific incidences where the interplay of many different circumstances create meaningful and unique experiences. For that reason, yes, I do find it helpful to speak to people of different genders, age groups, physical ability, marital status etc. But that’s all that this is – helpful. It’s not crucial. After all, all I’m doing is looking for examples – elaborate examples – to would help me make sense of things. And there are only so many examples you really need, provided they’re good enough, before it’s just up to you to make of them what you can.

The Horse Boy

The Horse Boy

I haven’t written about documentaries so far in this blog, and so I figured I should probably begin this post by laying out some basic truths about documentary films. You know, just so we’re on all the same page here.

A documentary film uses selective filming, editing, and narration to tell the viewer the story it wishes to tell. Nothing more, nothing less. That is absolutely fair, of course; Storytelling is what documentary films are all about. However, seeing as that is the case, documentary films should never be taken at face value. They do not give the whole picture; and they don’t necessarily – nor are they obliged to – give even an honest picture. The fact that the raw material of which they are crafted is footage of mostly spontaneous social interaction contributes greatly to their magic and appeal. But we must avoid using such terms as truth, reality, objectivity etc. when discussing documentaries. They’re not necessarily any more “real” than a romantic comedy starring Adam Sandler. So there’s simply no use in questioning their validity or truthfulness, any more than we would that of 50 First Dates. They’re stories. They’re representations of reality, yes; but that doesn’t make them particularly real.

Right? Right. Now that that’s out of the way, I can begin.

I have to admit that as a social anthropologist studying autism, I have made a decision (not necessarily a conscious one) to focus on the experiences of autistic people themselves, rather than those of the people around them. I felt the experiences and perspective of parents to autistic children, for example – important as they may be – are already getting quite enough attention as it is. And maybe I just didn’t want my own understanding of autism to be skewed by them. I can’t vouch that this is the best way to go; I did have parents suggesting to me that my perspective would be intolerably swayed without considering their perspectives. Well yes, maybe. The thing is that any perspective is always swayed, so you might as well be aware and in control of just how you allow yours to be influenced. Either way – the fact of the matter is that I mostly distance myself from the perspectives of parents to autistic children. This also means, almost inevitably, that I distance myself from the experiences of autistic children; except when those are reflected upon by autistic adults when recalling their own childhoods.

So The Horse Boy was, in a way, an important reminder of the very obvious fact that every autistic adult has a history of being an autistic child. And that parents are very often the most influential factors in those children’s lives. I needed this reminder, strange as it may seem.

I enjoyed The Horse Boy. It had a certain honesty to it that appealed to me and made me think long and hard not only about autism, but also about parenting – including my own. Because The Horse Boy wasn’t so much a film about Rowan (the child). It was more a film about his parents – particularly his dad, Rupert, who apparently was the one to come up with the idea of going to Mongolia in the first place. It is a film about relationships – Rupert’s relationship with his wife, with his son, with autism (as a thing, a category, a concept), with horses, with Mongolia, and with himself. And yes, also, implicitly, with a camera-crew and the prospect of making a successful documentary. So The Horse Boy, the way I saw and interpreted it, is indeed a film about a parent’s journey; but as with any good parent, his child – his son’s well-being, comfort, happiness – is an inseparable part of his own experience of life; of his own well-being, comfort and happiness. These connections and interrelations are the stuff of which all families are made of. So ultimately, this is a film about a family. A family that struggles. A family that needs help – and that seeks an unorthodox way to relieve it of its struggles.

The Horse Boy isn’t about healing autism, and it deserves credit for that. Sure, they all struggle with autism; Rowan especially, but his parents as well. But autism is never framed as a rival or an enemy; the idea of somehow eradicating it is never brought up. Autism is not conceptualized as a separate thing from who their son is. Instead, the family is simply trying to deal in the best way it can with the challenges having an autistic child – or in Rowan’s case, with being autistic – presents. The Horse Boy is about healing the distress that often accompanies being autistic, and that which accompanies loving and caring for an autistic person. This cannot be done with a drug or any other sort of biomedical intervention; because such interventions inevitably focus on the body. But the problem isn’t in the body; or at least not just in the body. Indeed, some forms of distress are made of broken or loose social connections. Or impossible expectations. Or negative emotions. Or confusion. Or doubt. Or uncertainty. Or fear.

And it is these aspects of the child’s and parents’ distress that were targeted by the Mongolian shamans. And it is why – to the audience’s perceived amazement – the rituals actually helped.

I don’t know hardly anything about the Mongolian belief system or its traditional medicine. From the film, I can infer that it involves some sort of ancestor-reverence and belief in spirit possession (so that the shaman argues that Rowan’s soul is possessed by Kristin’s deceased grandmother). Explicitly, the healing rituals are apparently meant to both appease the spirit and confront it in battle, in order to remove its grip of the child. But we don’t have to accept the metaphysical belief system of the shamans to appreciate the positive effect that such a ritual may have. There are other, more earthly ways to account for why this ritual – or rather, this series of rituals – had made a difference in the lives of Rowan and his parents.

It’s not so easy to tell what this effect could be, however. With the limited information we have, it is indeed quite impossible. To do that, we will have had to take a much, much deeper look at the rites themselves, where exactly they were performed and why these places are significant, who precisely performed them and what their exact role in society is, what artefacts were used and what they symbolize, what texts were recited and what they mean, as well as the specific interactions between the healers and Rowan, between the healers and Rowan’s parents, and between the various healers themselves. Not least, a very profound familiarity with this particular society’s beliefs, values, and language is required. Without any such knowledge, the best we can do is speculate. And speculate is precisely what I am going to do. I am hoping to show that whatever the specific characteristics and attributions of the rituals may be, such rituals in general may indeed have a positive, durable effect on relieving one’s distress. And this is regardless of whether one is willing to accept the existence of spirits and demons.

Mainly, what the series of rituals carried out during the family’s visit to Mongolia did was to put Rowan’s suffering in context – a different context. It has given it a narrative: a cause, a reason, an explanation. A history that goes far beyond his own still short existence. It has located Rowan’s suffering; and significantly, it has located it outside of Rowan’s own body (or more accurately, inside his body, but as an external intruder). The shamans never mentioned ‘autism’, mind you. ‘Autism’ was never the object targeted by their rituals. They targeted only the suffering; only the distress. So in the eyes of father, mother and son, what the healing rituals did was to strip Rowan’s distress – as well as his parents’ – from the binding label ‘autism’, with its usually-not-very-positive, Western and Modern and Medical connotations. Instead, they have placed them elsewhere. Once this change is achieved – and it’s not easy to achieve, as one can easily imagine – many other things are likely to change with it.

For example, the series of rituals had the rather immediate effect of altering Rowans’ surroundings – mountains, horses, streams etc. – as well as, arguably, his symbolic position within those surroundings. It has placed him in the centre – in fact, it has placed him as the centre – rather than viewing him as (metaphorically) lagging behind or being pulled forward to somehow keep up. It has altered Rowan’s parents’ understanding of him and expectations of him, thus in a sense modifying and revalidating Rowan’s presumed role within the family, within society – and indeed within the world. It has probably affected the relationship between the two parents, perhaps readjusting it so that it is more geared towards Rowan’s own difficulties and capabilities, which are presumably very different from those imagined by Rupert and Kristin since before he was born. Or perhaps the rituals have somehow ruptured Rowan’s constant painful memory of a (short) lifetime of much distress, anxiety and discomfort, fixing his gaze forward instead, towards a more comfortable, accepting, bright future.

Like I said, I can’t be sure of any of these claims. They are all mere speculations – if that. But my point is that too often, when we think of autism and the distress and suffering that accompany it, we think of brain wiring, cognitive functioning, DNA strings etc. Those all play a part, yes. But other factors are also meaningful. It could be argued that other factors are even more meaningful. These ‘other’ factors, such as those noted above, are neither fixed nor inevitable aspects of autism. Their transformation shouldn’t ever be conceived easy, but it shouldn’t be reckoned to be impossible either. Our experience of the world is constructed of many types of materials, connected in an infinite number of ways. At least some of them are potentially alterable.

What do you make of all of this?

Playtime

Playtime (1967)

It was suggested to me recently that if I want to watch a movie that really sheds some light on what being autistic is like, then I should watch Jacques Tati’s 1967 Playtime.

Here’s what M Kelter from Invisible Strings had to say (this is copied from the comments section of my blog):

m kelter November 25, 2013 at 4:04 pm

…I’ll tell you one thing: I said there’s no film that assumes an autistic POV…in a way, that’s not quite true. There’s a film by French director Tati called Playtime. I’ve always felt that, on many levels, this film replicates my experiences of the world. The sensory experience…the presentation of “normal”…all of it comes from a POV that replicates how the world feels to me. If an NT wants to understand how it can feel to experience sensory overload…or how it can feel to be confused by non-verbal communication, by systems of normalcy…Playtime is a great experience. I love the film, but I also think it puts the viewer in a world that is warped, confusing, hard to process…it’s a world I am very, very familiar with. Anyway, instead of films that present autistics as these walking diagnostic manuals, I’d rather see more films like Playtime, films that assume a POV that pushes normal to the side.

Well, I took M Kelter’s advice, and I’m thrilled I did. What a ride.

Now, if you haven’t seen Playtime, I strongly urge you to give it shot. Granted, it’s not for everyone. It hasn’t got a plot – not in the conventional sense, anyway – and it hasn’t really got characters – again, at least not in the conventional sense. There’s really nothing conventional about this film, to be honest, but that’s exactly what makes it so magical. It’s an experience more than anything else – a trip, if you will. By ‘trip’ I don’t mean the kind you get from LSD. Or maybe, somehow, it’s exactly what I mean; the same sort of metaphor applies. You get a glimpse of a world experienced differently: sounds are accentuated; your sense of orientation goes awry; things are not what they appear; confusion ensues – even panic. Is this the sort of thing you were referring to, M Kelter, when you wrote that “it puts the viewer in a world that is warped, confusing, hard to process … a world I am very, very familiar with”? I suppose it is. And so as an anthropologist trying to appreciate the experience of what it’s like to be autistic, I relished the opportunity for this masterfully crafted glimpse at a different way of seeing the world; however short and artificial.

Now, for those of you who haven’t seen the film, I should probably give a brief description of what goes on there. Yes, I will be doing Jacques Tati a terrible injustice, because the experience of watching this film is precisely the sort of experience that just can’t be put into words. It is very much a visual and auditory journey, not a narrative. But I might as well give it a try.

The film is set in an imaginary “modern Paris”. Not the old city with its unique architecture and very particular charm. No, there’s nothing old in Playtime; everything is sparkling new. This city, which was constructed solely for the purpose of the film, is ultra-modern, by what I imagine to have been the standards of “modernity” in 1967, the year this movie was filmed. It depicts modernity gone mad, stretched to its absolute point of absurdity. It’s all glass and metal, right angles, spic and span cleanliness, and abundant technology. Tati makes a good job at not allowing his creation to be reduced to any crude or simplistic idea of good or bad; it is neither, really. It simply is. In fact, oppositions are a theme in Tativille; friendliness and alienation, order and chaos, dreariness and ecstasy are all present and are intermittently drawn to their extremes at varying degrees of simultaneity.

And the noise!! It’s everywhere and it’s relentless, it starts off as protruding from a distance, but gradually it’s made to feel ubiquitous and near, as it virtually becomes synchronized at some point, or so it feels, with the viewer’s own fluctuating hart rate. Roaring vacuum cleaners, buzzing intercoms, wheezing sofa cushions, pounding footsteps, beeping car horns, ear-deafening announcement speakers and screeching TV sets, and the list goes on and on… Oh and the chatter! The constant, rampant rambling, loud laughs and indistinguishable babbling are at times almost too much to bear. Also, Tativille and its residents are perpetually in motion – bustling roads and lively shops and escalators and elevators and construction work. Later, in the evening, increasingly frantic dancers and waiters blend in a less-then-perfect harmony, gradually seasoned by random drunkards, who quite naturally join in the seemingly improvised though endlessly complex choreography.

Utter disorientation is perhaps the hallmark of this film, as along with the protagonist Mousier Hulot, the viewer is ingeniously led to constantly wonder in confusion: wait – are we inside or out? That there – is that a wall, a door, or just an absence? Am I looking into this building, or is it merely a reflection of that other one? Are those people up there dancing to the music…? (No, they’re just taking a window apart) Is that truck going to pull-over or keep going? Are these people leaving or just standing up to say hello to friends? Is that desk an item for sale or is it a functioning desk in an office? Do I recognize this person from before or is it someone else entirely? What language is that person speaking? Is he speaking to me? Where is everybody gone? Where on earth is this film headed??

I could go on. There is so much more to Playtime. So many astute observations on the various layers of absurdity in modern urban living; on divisions and their breaking; on the fine, almost invisible line between intimacy and estrangement; on globalization, with its apparent effect of alienation, but the underlying reality that people will always be people, for better or worse. Their behaviour does take very different forms, though; because the environment matters, and our interaction with it affects us, often in ways that are unpredictable to us, but that make sense nonetheless.

Well that’s enough of that. That’s all I can do to put into words what was in fact never meant to be worded. Just watch the film. I don’t think you’ll regret it.

So let us get back to the issue at hand – what has Playtime taught me about what being autistic might be like? What do I make of this film as an anthropologist? What’s to be learned?

As I implied a moment ago, I think Playtime can help us to understand the interaction between people and their environment; particularly those people who are more susceptible than others to being affected by their surroundings. But wait, are autistic people more susceptible then others to being affected by their surroundings? Well, yes, I suppose they are. We all experience the world through our senses. When our senses are enhanced or very sensitive, our experience of the world is likely to be affected.

Thus, it should be interesting to use Playtime as an example and ask – What effect do autistic people’s enhanced sensory perception and sensitivity – often to the point of it being unbearable, sometimes to the point of it being mesmerizing and pleasurable – play in their lives?

These are difficult questions. Social anthropologists often struggle to incorporate the body – in any form – into their analyses. Try and ask yourselves: What’s the role of sensory input in social structures, in social relationships, in social forces, in social dynamics? It has a vast influence, clearly, but isn’t it inevitably just a bit vague and elusive?

What’s difficult about this is that when we talk of senses and sensory input, or the actual ways in which the environment becomes inscribed on our bodies and brains, we almost inevitably wind up over-generalizing. After all, every sound is different. Every sight, every texture, every smell or taste is unique. Even if two sounds – identical in every measurable way – are played to 2 different people in different contexts, they will have different meanings, they will be interpreted and experienced differently; indeed, they will be heard differently. Every single sensory input is, in many ways, singular and unique. How can such a singular occurrence be incorporated into any sort of general theory?

And how can this even be framed within a social science perspective?

Well, the single most relevant concept that can help us to start making sense of these questions is what’s known as ‘affect’.

I will not presume to define affect; better men and women then me have tried, to varying degrees of success; and I’m not yet at a point where I can synthesize these often very varied framings of this concept to anything very coherent, or even intelligible, without this turning into a heavy-laden theoretical discussion, which would be grossly inappropriate for this platform (and not a whole lot of fun to write, either). Instead, I will toss around some very partial explanations of what ‘affect’, in the context of the social sciences, might mean:

Affect refers to the universal and innate human capacity to affect one’s environment (including other people) and be affected by it. Affect refers to that elusive sense of one’s body playing a significant role in the intensity of one’s experience of the world. Affect refers to the immediacy of interaction, that layer of it that has not yet been “contaminated” or thwarted by meaning, interpretation, or language. Affect emphasizes the singularity of any human experience, those aspects of it that can never be accurately represented, duplicated, translated, or reproduced. Affect refers to that constant sense of motion in one’s state of mind, mood or thought. It is that unnameable sensation that follows an idea, right before that sensation is translated into language to form just another idea. Affect is that which is inscribed on us through our senses in a way that makes a difference – whatever that difference may be.

Ah, I wish I could offer a more structured or coherent explanation. But that’s the whole thing with affect; by its very definition, it eludes structure and coherence. It is exactly that thing that language could never quite get a handle on, whether because it is pre-lingual, or extra-lingual, or simply ineffable. Affect pertains to those sensations we feel that we can never find quite the right words for. And the instant we find the words – the sensation is gone.

I don’t think I have ever spoken to anyone on the autism spectrum who hadn’t told me at one point or another about sensory sensitivities that they have. And this is never regarded as inconsequential, trivial, or insignificant. Quite often, in fact, sensory sensitivities are mentioned as the single most important aspect of living with autism. And it makes perfect sense, after all. Our senses are our window to the outside world; it is the media through which our environments affect us, right from the moment of our birth (and, indeed, even beforehand). It is the basis of all learning, of all knowledge, of all experience. So when our senses work differently, this is likely to make pretty much everything different. Social interaction, language, communication, control of one’s limbs, the sense of one’s body, preferences, emotions – it impacts it all.

Have I explained anything at all? No, I don’t believe I have. But by throwing these observations around, I am merely hoping to sow some seeds of understanding. You know, for later.

So allow me to end this post with a question for those of you on the autism spectrum: what sensory sensitivities do you experience? And more importantly, how do you feel these affected you throughout your life? Feel free to give one or two examples, or if you don’t mind, a lengthier answer will do perfectly. I genuinely look forward to hearing your replies.

Marathon

Marathon (2005)

Roy Richard Grinker is definitely one of the best social anthropologists out there to study autism. If you’ve never read Unstrange Minds – Remapping the World of Autism, I strongly recommend it; it offers a wonderful overview of the social and cultural context of autism, and it’s extremely well-written and engaging. Among other things, Grinker presents the reader with a picture of how autism is framed, interpreted, and understood in various cultures throughout the world. One of these is South Korea. So to me, Marathon was not only a beautifully made film about a topic that fascinates me, it was also a visualization of a world I was somehow already partly familiar with, and it made it all the more appealing. Anyway, in case I need to make it even more explicit – I loved Marathon. I thought it was excellent in so many different ways. Representations wise, it’s not perfect, ok. But honestly, when the protagonist is a barely verbal, quite severely autistic character, you always run the risk of painting a very specific, not necessarily representative picture of autism. But within the remits of their protagonist’s individual capabilities, he is a positive, well-rounded character, with personal coherence (so that his autistic traits don’t just ‘dissolve’ during the movie like in so many other films) – and that’s really all anyone can ask for.

Cho-Won loves animals; one of his favourite things to do, ever since he was a child, is watching nature documentaries on TV – and he knows the narration by heart. His absolutely favourite documentary is the one about the Serengeti Wilderness, an African region “uncontaminated by people”, where wild animals can roam free. He sympathizes not with the lions or cheetahs, but with the grass eaters, the animals of prey. He adores the zebra, which is a prominent theme throughout the movie. This reminded me of a point Temple Grandin often makes, about the similarity of experience between autistic people and prey animals, for both of whom fear is an overbearing emotion (what do you think about this?). According to Grandin, this shared experience is what allows her to understand cattle as well as she does – and she obviously does.

But Cho-Won’s love of Zebras didn’t lead him to become an animal behaviorist; instead, it mostly got him into trouble. Running away at the zoo, for example, or grabbing ladies’ purses or trousers if they happen to have a zebra pattern. Yet, in various stages of the film, his love for the striped animal also has benefits; he seems to understand motherly compassion, as he repeats the narration about the mother zebra caring for her cub; he understands danger, knowing that zebras can’t afford to stop running or fall over, as they will be eaten; he understand fear, sympathizing with the zebra’s constant need to look out and take care.

Understanding and expressing emotions are other themes common throughout the movie, and they’re articulated very carefully. “Your dad goes on a trip…” his therapist posits, “your mom is in the hospital … how would that makes you feel?” she shows him drawings of faces: “Happy? Sad? Angry? Scared?” His dad incidentally did go on a long trip, and his mother did lie sick at the hospital. The film seems to indicate that in some indirect way, these exercises have indeed helped him sort out his emotions. Also halfway in the film his mother teaches Cho-Won to smile, which he doesn’t quite get, until the very last scene, where he finishes the race, and his picture is taken. His running away at the zoo, in the beginning, was later recalled by him as a traumatic event, when he accuses Kyeong Sook of deliberately letting go of his hand, wanting him to run off. And his hesitant participation in the hiking trips with his mother evolved into a complex relationship between mother, son, coach, and long distance running, where prizes (choco-pies, medals) are awarded for success and the fear of pain (injection) thwarts defeat; this ultimately leads to the important and interesting dilemma that marks this film: whether Cho-Won enjoys running or was he numbed into passive submission by his mother’s constant pushing.

In Grinker’s writing and others’ about autism in South Korea, what stands out is the significant and often frustrating role of mothers; they are held responsible for their child’s autism; they are expected to subdue it, treat it, or at the very least conceal it; they must negotiate the diagnosis, often exchanging it for an arguably less stigmatizing (but false) ‘reactive attachment disorder’ (RAD); often, the concept of ‘border’ autism is used to frame the condition as uncertain, contingent, and temporary. Mothers of autistic children (adults too) are required to simultaneously be both assertive and respectful as they battle exclusion and discrimination in a society where individuality and defiance are frowned upon, and conformity is mandated. They need to ceaselessly explain, apologize, and excuse their children’s slow progress in school, in an environment where academic excellence is revered. To top it all off, fathers seldom take any part in caring for their autistic child, or negotiating his/her place in society. Yes, none of these problems is entirely unique to Korea; but this specific combination of societal expectations and limitations make the Korean “version” of autism quite idiosyncratic, and make the role of mothers challenging in very particular ways. It is apparently within this social context that Cho-Won’s mother faces the formidable challenge of raising an autistic child.

This blog, and my research in general, is not about the experiences of parents, siblings, caretakers, or children of autistic people. These are of course very significant. It is important that they are recognized and dealt with, and many researchers very successfully do so; but it was my explicit decision to limit my research, within reason, only to the experiences of autistic people themselves. However, Marathon represents a good example of one of those situations when the mother’s and child’s experiences become virtually indistinguishable. In fact, this is the very question the film’s makers pose: is running what Cho-Won wants, or is it what his mother wants? Is it him that can’t live without her, or her that can’t live without him? Was he upset by the coach’s unorthodox methods, or was she? Seeing as Kyeong Sook always had to make nearly every single life decision for her son, either big or small, how can one even tell what are his choices anymore? And is that really a valid question? In other words, can Cho-Won even make choices?

Still far from being able to answer these questions, I could try and suggest a way of approaching them.

Cho-Won’s mother struggles with her inability to determine whether he chooses running. She knows he likes zebras and choco-pies, meatballs dipped in ketchup and dancing in the supermarket. These preferences are easily communicated. What’s different about running is that it is painful (as his coach goes to great lengths to illustrate) and potentially dangerous. It is a more complex question than whether he likes choco-pies, for example, because running involves risk. Although she knows Cho-Won better than anyone, Kyeong Sook repeatedly fails at getting him to communicate his choice about running.

But perhaps we’re thinking about this all wrong; perhaps it’s not a problem of communication at all.

Usually, when one thinks of ‘choice’, one imagines an autonomous, individualized thought process, which might be influenced by the opinion of others (namely through advice and council), but is ultimately achieved within the bounded self. But is that really the only possible way to frame choice? After all, people make decisions in context. For example, a person is usually ‘ascribed’ with certain markers of identity at birth: gender, nationality, or ethnicity. Others are similarly innate (I use this word here sloppily) but are found out later, such as sexual orientation. Still others are considered to be personal preferences, such as political affiliation, hobbies, or an inclination to monogamy. But what if we don’t regard any of these as either purely ‘given’ or purely matters of ‘choice’; instead, what if we imagine choice as situational, whereas any ultimate state of being is a consequence of one’s environment, historical context, milieu, social expectations, and indeed some personal choice – this time in the traditional sense of the word.

Is being Jewish my choice? Choice has something to do with it, yes, because no one is forcing me to accept Judaism as my religion. But is it entirely my choice? Of course not. I was born to Jewish parents, grew up in an environment where almost everyone is of this faith, and I am expected by the people close to me to accept it. These factors aren’t the least bit marginal in the question of my choice of religion; they’re constitutive of it. You could say “yes, but if you decide to become a Buddhist tomorrow, that would be entirely your choice”. Not true. The only way that were to happen is if other social influences not only encouraged me, but also allowed me to convert to Buddhism – and that these influences would in some way overpower the former influence of my family and childhood friends. In that case, these new factors would have a significant share in “my” decision to convert. This is arguably true of any choice, large or small. Even my decision as to what to eat for lunch today would be affected by all sorts of influences; my upbringing, my cultural preferences, my budget, my grocery store’s inventory, and how much time I can spare to prepare lunch for myself. It’s never really just “my” choice, is it? Ok, you could frame it as ultimately my choice; but I propose a different perspective; that it’s partly my choice. Every individual’s choice is always just a part of the story of how things came to be.

Cho-Won may not have become a runner on his own accord. That his mother ‘pushed’ (a quite judgmental term) him into it obviously had a huge part in it. But who is ever unaffected by the decisions made for them by parents? And grandparents, and teachers, and political leaders and policy makers? Kyeong Sook may never get her son to articulate whether he accepts the risks of running marathons and chooses to do it anyway; and in no way am I implying that his desire is irrelevant or insignificant! But if he was given every opportunity to stop running, and kept at it; and if he enjoys the activity while he is pursuing it; and if he seems content with life in periods where he runs regularly; then his part of the ultimate choice to run seems more or less resolute. The question of whether it is his choice or his mum’s might simply be misguided; the choice is situational (a situation which includes Cho-Won’s communicational difficulties, among all other factors). It is both his and hers. The fact that he’s autistic, the fact that his coach believes in him, and the fact that he’s a good runner were all important parts of this. The circumstances seemed to have led him to register for running a marathon; but then again, actually completing it – well, that was entirely up to him.

Mary and Max

Mary and Max

The sad and beautiful tale of Mary and Max is one of my favorite films of all time.

On two opposite sides of the planet, a lonely little Australian girl and a lonely middle-aged obese New-Yorker become friends. Mary and Max are both made of plasticine, yet they’re two of the realest people ever to appear on screen.

From Mary’s poo colored birth-mark to Max’s chocolate hot-dog recipe, from Ethel the rooster to Henry(s) the fish, from Ive’s painted eyebrows to Damien’s stutter, from egg laying rabbis to babies found in beer glasses, from Vera’s cooking sherry to dr. Hazalhof’s obsessions with warts, and from bird taxidermies to jars full of toe-nail clippings – every single scene in this movie is a little miracle of compassion and nuance, a portrait of humanity at its simultaneous highest peaks and lowest crevices.

Shades of brown and tan are gently sprinkled with reds and pinks, empty shelves are decorated with toys, bare walls are adorned with drawings, expressionless faces are made to smile, while the lonely and potentially grim existence of a sad little girl and an anxious middle-aged Aspie is being filled with excitement, chocolate, pets, and friendship.

I could probably go on like this forever, counting the infinite number of ways this film touched me, but what would be the point? Sufficed to thank Adam Elliot for making us this modest masterpiece, and urge whoever hasn’t watched Mary and Max to not waste another moment.

The emotional textile of Mary and Max’s existence is so rich, that one barely manages to take a deep breath between gently laid brush strokes of sadness and courage, loneliness and hope, despair and longing, fear and love. It is this vivid emotional landscape that inspired me to finally attempt a discussion on what stands at the core of my research; emotions and their meaning – particularly in the case of autistic people.

Confuzzled. Apparently just another made-up word (alongside snirt; namely the combination of snow and dirt, and smushables; the groceries found squashed at the bottom of the grocery bag), Max’s neologism reveals a lot about the nature of human emotions and the words we have for them. A combination of confused and puzzled, it even says something about the inherent limitedness of our emotional lexicon, whereby the words we have to describe our emotions are often insufficient. This limitedness is particularly consequential, I dare to suggest, in the lives of autistic people. But let us start from the beginning. Brace yourselves; discussing emotions is always an arduous task.

Many social anthropologists have wondered about the nature of human emotions. Are they universal? Do people of all cultures share exactly the same emotions? Are we all born with a capacity to experience emotions in similar ways? Do the words we use to describe our emotional states accurately reflect what we actually feel inside? Based on an extensive reading of anthropological theories, I will answer all of these questions with a hesitant ‘no’. Emotions, according to such theorists as Catherine Lutz, Unni Wikan, and Sarah Ahmed, to name a few, are not a property of the individual. They are not internal. Our emotional terms refer not to distinct ‘things’ within us, but rather to the nature of any specific relationship between a person and another person, between a person and an object, or even between a person and an idea, at a given moment. Emotions are always directed at something or another, and in this directedness they lie. Emotions are the stuff of which connections are made of. In this sense, emotions are relational.

Moreover, while all humans are born with the innate capability of being affected by their environment, their company, and even their own thoughts, this capability is not what is usually referred to when emotions are talked about. Rather, emotions refer to the cultural and lingual categorization of these affects, the connotations they raise, and the value judgment they are given (good or bad? Pleasant or unpleasant? Moral or immoral?). Emotions are the afterthought of the affective, the visceral, even the somatic. An afterthought that is inevitably framed in culture and limited by language. In this sense, emotions are socially constructed.

Similarly, seeing as humans are products of their upbringing, of the language they speak, and the social, historical and cultural context in which they live, our only available means of making any kind of sense at all of what we think and feel – is by using the vocabulary handed down to us by our parents, teachers, friends, the media etc. One cannot interpret what one cannot name. People of different cultures, therefore, or of different historical times, would have quite different ways to discuss their emotions; i.e., they will experience their emotions differently. In this sense, emotions are culturally specific.

Finally, emotions are only ever invoked in context. Sadness, or hope, do not lie within us waiting to surface; instead, emotional terms are begged when events, occurrences, relationships, and evaluations of a certain kind occur. Emotions are thus always specific, and no two are alike, despite the limited vocabulary we have whereby fear, for example, can refer to a great many different kinds of feelings, effectively crudely lumping them in one distinct ‘emotion’. When we think of emotions, when we articulate them – they are there. But when we forget about them, they simply cease to be. They are gone. When we are reminded in them again, they are then altered, changed, adapted to their new context, this time as the objects at which our new emotion is directed. And so on and so forth. In this sense, emotions are emergent.

“Max knew nothing about love,” we are told; “it was as foreign to him as scuba-diving … He felt love, but couldn’t articulate it. Its logic was as foreign to him as… as a salad sandwich”. Is this a sentiment many on the autistic spectrum share? It has been my impression that yes indeed, many autistic people frustratingly feel that love is too confusing, inexpressible, and uninterpretable to them. We all feel this at times, I would venture, but possibly not nearly as frequently as autistics do, and to a significantly different extent.

“He felt love, but couldn’t articulate it”. But if that were to be the case, how would Max know that he did indeed feel love? What would be the nature of a love unarticulated, and how would one recognize it as such? Emotions, I and anthropologists before me argue, are never independent of their articulation. In fact, it is the very articulation we speak of when we speak of any specific emotion. What is love, if it is not the loving words, the loving embrace, or the loving gaze; if it is not the motivation to act in certain ways, to think particular thoughts, or to see things in a certain light? Articulation, clearly, is not limited to words. There are various means of articulating love; and seeing as no two emotions are ever identical, articulations of love are potentially infinitely varied.

“He felt love, but couldn’t articulate it”. So what are we to make of this statement, given that it contradicts, in a meaningful way, what we take emotions to be?

Had Max felt a confusing mixture of thoughts and physical sensations of a particular kind, energizing him with great valence; arousing positive connotations and affectionate memories; warping his perspective into a good-natured acceptance of things, like when looking through the eye-piece of a camera while its lens gradually focuses on a patch of colorful flowers – while having no idea that this very concoction can be said to be ‘love’ – was it in fact love that he can be said to have felt?

The unsophisticated and disappointingly straightforward answer would supposedly be no. Love exists only when love is spoken of. Hence, Max did not feel love. But wait, love was spoken of, by the narrator, in retrospect. So in this case, Max’s sensations can be said to have been feelings of love. But what is the role of the narrator in Max’s life? None. The narrator is part of our perspective on Max’s life, not of his. Max is ignorant to the existence of any such narrator telling his story, and articulating his emotions for us, in ways Max cannot. In max’s life, love was never explicitly expressed.

But if it wasn’t expressed, it was certainly articulated! We see it being articulated in so many ways!! In Max’s excitement upon receiving a letter from his friend Mary; at his concern for her well-being; at his interest in all aspects of her life; at his advice for her, and his loyalty to her, and his kindness towards her. We see it at his forcing himself to smile for her sake, and at his using her own tears to make himself cry. Even at his rage and disappointment when he feels she has betrayed him. These are all, unquestionably, beautiful articulations of love! Must we discard them merely because the word ‘love’ is not explicitly uttered by either party? Simply because Max may be unaware that this – this precisely – is what people speak of when they speak of love? Must Max be robbed of having experienced love merely because he was oblivious to the love he was indeed experiencing?

It doesn’t feel right. It doesn’t seem fair.

So let us pursue a different option: Max loved Mary, and articulated this love in his letters, and in this very articulation his love can be said to have existed. Love is relational – and in the relation between Max and Mary there was love. Even more so, the relationship between Max and Mary can be said to have been made of love, love being the proverbial stuff of which their connection was made. Love is emergent, so in every new letter, in every bar of chocolate, or a drawing of a pet, brand new shades of ‘love’ arose and expanded. With this perspective in mind, we can say love is the central theme, the driving force, of Mary and Max’s tale. Love is everywhere! And yet confusingly, frustratingly, we are told that Max “felt love, but couldn’t articulate it”. Couldn’t articulate it? That’s all he ever does!

It appears the logical conclusion would be to argue that Max indeed felt love, and indeed articulated it brilliantly, but was simply unaware that he was.

How can we make sense of this statement?

Love, like any such distinct emotion term, is socially constructed. But this is not to say that it is made-up, or in any way unreal. Not even remotely. Think of a building. A building is obviously constructed, but that does not mean it is imaginary, or in any way shabby, short lived, or inconsequential. It does imply, however, that it has not been in its current shape forever, and might not have been the same had circumstances been different. A Thai Pagoda is not similar to a Gothic Cathedral, though both are made of stone bricks. Moreover, the endurance of any construction ultimately depends on how well it is constructed; a well-constructed building can stand erect for millennia, particularly if it is made from quality bricks. And the precise nature, use, and overall shape of a construction depends on the historical and cultural context in which it was made, and in which it is currently being used.

If love is a construction, what is it constructed of? what are its bricks? They are the essentially human capacity to be affected in significant ways by one’s surrounding. Sounds abstract? It is. Strip love of its social, cultural, and historical significance, and you’re left with a strong feeling perhaps, but a feeling so vague that it is no longer recognizable or articulable.

If love is a construction, who constructed love? Generations of poets, authors, philosophers, theologians, scientists, readers, interpreters, parents, friends, lovers. Each employing the notions of their predecessors while adding their own ideas and experiences to articulate love in novel ways, which then subsequently accompany the concept of love further along.

And importantly, if love is a construction, what are its blue-prints and designs? What is its architecture? That would be the way love is framed, categorized into kinds, interpreted, and made sense of; the way it is valued and revered, glorified but also feared; the connotations it raises, the cultural references it builds on, the way it is typically exhibited, expressed, verbalized, and even experienced!

Stone is inevitable. But it can take the shape of a building in infinitely various ways. Similarly, our capacity to be affected is inseparable from our humanity. It is, also, inevitable. But this capacity can take the form of emotion in infinitely various ways. That’s what is emphasized when it is said that love is a social construction.

So where does this leave us? I suggested that Max was indeed feeling love, though he was unaware that he was not only feeling it, but was articulating it brilliantly. Now that we have conceptualized love as a social construction, or in other words, as the result of a collective social project, we may begin to understand why Max wasn’t aware that his relationship with Mary would normally be referred to as love; why he wasn’t conscious to the fact that he was articulating love; and why the language of love was said to be foreign to him. Being autistic, Max may have lacked what can be called ‘social intuition’; the capacity to effortlessly internalize such profound social discourses as gender roles, sociality, or indeed ‘emotion talk’.

In other words, seeing as love derives its meaning collectively, through the inherently social practice of language (verbal, written, or extra-lingual), one can be expected to be confused by it if one generally finds it challenging to intuitively understand other types of social practices.

“Its logic was as foreign to him as… as a salad sandwich” we are told of Max’s puzzlement of matters of love. So what is it about Max being autistic that created this gap between him feeling love and his expressed inability to articulate love? Emotions, it was said, are social projects, inter-subjective endeavors, where a term is infused with meaning that is then negotiated to the point of mutual agreement. When somebody says “I love”, they are not simply expressing outwardly a strictly internal ‘thing’. No, instead, by uttering the word love, they infuse this utterance with a history of social connotations, with a world of cultural significations; they infuse it with great meaning. This much is – in some way or another – intuitive for neurotypicals; which is why love, or any emotion for that matter, is indeed never really straightforward, but still relatively understandable. Neurotypicals are generally comfortable treading the murky waters of emotion talk. But not autistics, for whom this murk often proves too opaque and impervious.

Max was not aware that love can be articulated in giving a thoughtful advice, by placing a gift-pompom on top of one’s yarmulke, or by sharing a favourite recipe with a friend. Max did love Mary; but unfortunately, seeing as the meaning of ‘love’, in its typical use, is framed and indeed ‘coded’ by neurotypicals, its complex and nuanced meaning was lost on him.
I’ll end with a couple of quotes from Mary and Max that I simply adore:

(1) “I cannot express myself very clearly at this point, and so I will list my emotions, in the order they feel most intense: hurt, confuzzledness, betrayal, discomfort, distress, and wheeziness.”

(2) “When I received your book the emotions inside my brain felt like they were in a tumble dryer, smashing into each other. The hurt felt like when I accidentally stapled my lips together. The reason that I forgive you is because you are not perfect. You are imperfect, and so am I. All humans are imperfect.”

	Jeremiah on Adam (2009)
	Ben Belek on A Smaller Mask
	ilonamennerich on A Smaller Mask
	routinesrantsandrand… on Mary and Max
	Kimberly Anne Smith on Lars and the Real Girl