The limits of body, the limits of language

(In this fourth post in our series of guest posts on the social study of autism, it’s great to have Soula Marinoudi. Soula received her Ph.D. in 2014 from the department of Social Anthropology, Panteion University, Athens, Greece. Her research is concerned with the biopolitical regulation of disability and vulnerable subjectivities and bodies as well as with the ways language and the body, meanings and senses, empathy and performativity intersect, with an emphasis on autism and the formation of autistic subjectivities. She currently works as a researcher for the EU Seventh Framework Programme “Rescue”: Patterns of resilience during socioeconomic crises among households in Europe.)

During the last few years, while I pursued my ethnographic research on the formation of autistic subjectivities, I came close to autistic people, a minoritarian group, with which I wasn’t biographically connected. Still, the roots of my search were deep in my psychic structures. As a girl, I had experienced feelings of exclusion and not belonging. My relationship with the autistic people I met during the last five years helped me realize some of the meanings that these feelings have for me and for others, but specifically raised two questions which I need to discuss. The first concerns the notion of empathy, what anthropologist Veena Das refers to as “the feeling of pain of others in one’s own body”. The second is related to the concept of performativity, that is the psychic and embodied reproduction of the dominant discourse.

Recent psychological accounts of autism such as the Theory of Mind, provide a cognitive approach to autism and empathy, suggesting that autistics do not understand the minds of other people. Unlike this dominant cultural image of human communication, in line with which autistics only have deficits in contacting others, I focus on the primacy of their intense sensual experiences and suggest that we, neurotypicals, have no empathy for autistic people.

The definition of autism which I prefer, has come out of readings of autistics people narratives and describes the neurological disconnection between language and the body, during which the body blocks brain waves[1]. No matter how different their lived sensory experiences are, what is coherent in autistic life is the perception of information which cannot be generalized in conceptual schemas. Even for autistics who have speech, language is idiosyncratic and subjective, mainly affected by their senses, memory and experience, rather than discourse and representation.[2] As Dawn Prince writes “For me, language was blended inextricably to context and memory. This melding represented the most important thing in the world, and everything, from bathrooms to snails, to dogs, had language. If a thing existed, it existed as a living part of language and had a deep understanding of its place in the vibrations of speech, in the vibrations of existence.” Temple Grandin argues that some autistics are thinking with pictures, others smell in order to orient themselves,like my friend Barbara, who used to smell my hands every time we went on a different place than the one we used to hang around and I felt that this gave her a sense of identity and familiarity and helped her calm down. Noises are sometimes painful, the senses of pain and temperature on the skin are extremely subjective, a touch can be felt as a slap, while a surgery can be totally painless. Some people need to see and touch their bodies in order to feel sure of their existence. Time is chaotic. John asked me once: “Have you lived in the 19^th century?” “No, I said, I haven’t.” “Why not?” John continued, “What are the limits of time?”

I feel that autistics’ subject position derives from these incoherent sensory experiences, given that they are mainly affective, based on personal memories. Most of the autistics I met do not internalize and thus do not reproduce the structures of dominant discourse that affect our worldviews. I intend to focus on this difference and examine what comes out of this conflict, between the discursive bodies that we neurotypicals perform and the sensual dis-embodied autistic lives.

Since I had constructed certain cultural identities and, consequently, carried their political implications, I had to deconstruct these discourses and the power relationships, which I had internalized, in order to feel how autistics feel and how they are related to their environment. Autism often means stress and anxiety for the loss of the self and of the other, for the loss of time, even for the loss of one’s one body which is condemned to change and deterioration. This is of course common to neurotypical experience as well, but, in my experience, language and identities blocked the reconciliation with these inner feelings. The procedure of acquisition of language creates a conflict between our personal feelings, our senses, our memories and society’s expected representations. Language is mostly a tool for us to become accepted members of society and additionally, as Dawn Prince stresses “I learned very early that for most people, language was a kind of weapon rather than an amorphous mist of the birth waters of reality. It seemed that for most speaking humans, language could be considered a violent activity, in that it cut up the world, and its use also cut groups of people one from another. A knife was just a knife and bore no relationship to the cutting of language. A chair was just a chair where nothing sat. A breath was just a breath, a singular thing, apart from the heart, apart from the atmosphere, a thing separate from saying”.

I found that autistics sense this vulnerability which we all avoid to come in touch with and which is controlled by the fact that biopolitics locate us in certain power positions (gender, sexuality, health, race) where we transfer our feelings. In opposition to this reproduction of the social contract, empathy presupposes the death of our ego, of the world as we imagined it, of the imaginary spectacle of ourselves, which derives from our personal biographies. I argue that empathy and performing our social roles are mutually exclusive. In order to feel the pain of others on one’s own body, therefore in order to communicate with autistics is conflicting and incompatible with performing the dominant discourses which mediate our emotions, senses and relationships. Empathy presupposes the feeling and experience of abjection and exclusion from human society, it presupposes this loss of intimacy and the reconciliation with the pain of our inner existential loneliness, which we experience whenever we contact others. It presupposes the autistic feeling of not being able to avoid the affect, the body and its structural vulnerability.

Autistic language is the idiosyncratic relationship with the senses. It is experiential and we need to deconstruct our certainties in order to communicate with them. My autistic friends ask me how do we buckle a button, why do women wear earings, what is “you are”? what is time? And I think I understand now that I need to travel the distance to communicate. More specifically, from the privilege of common language and belonging to face to face relationships, personal contact, mutuality.

[1] William Stillman, Empowered autism parenting: celebrating and defending your child’s place in the world, Jossey-Bass, 2009.

[2] Dawn Prince, Cultural commentary: The silence between: an autoethnographic examination of the language prejudice and its impact on the assessment of autistic and animal intelligence, available at http://dsq-sds.org/article/view/1055/1242

Related Posts:

Being in-between

Am I studying autism to contribute knowledge to the discipline of anthropology? Or am I using anthropology to better understand autism? These two approaches – these two options – are not necessarily mutually exclusive; in fact they have shown over the past couple of years to be quite in concert, at least as far as I was concerned. And yet often, I’m faced with the dilemma of having to present my work as either one or the other. For example, I recently had to decide: should I end my article with “and this is why studying autism offers extremely useful insights to our understanding of human interaction”? Or do I end it with “and this is why anthropology is so indispensable for our understanding of autism”? (I’m paraphrasing, of course)

Most social anthropologists aren’t faced with a similar dilemma. Someone researching healing practices in Ghana, for example, is quite explicitly – as far as I can tell – working to understand (a) the people of Ghana, (b) Healing practices and (c) human behaviour. They would often have different research communities for each of these topics (the latter just being ‘general social anthropology’ or something to that extent): conferences would be organized, and journals would be published that address each of these concerns. And that would be fine. Natural, even. I don’t recall West Africanists agonizing over their role and aims, wondering if they’re doing one or the other. They’re simply doing both, and that’s what’s expected. So they’re using the accumulated knowledge from anthropology to understand the specific people they’re working with, while at the same time using specific knowledge they acquired about the people they’re studying in order to add to the cumulative anthropological body of knowledge. That’s pretty much how the system is meant to work. No problem.

So why does my case feel a bit different? Well, to be honest, I could simply be wrong about my not sharing this dilemma with others. That is very likely. Or it may just be that I’m biased into thinking that my area of study is so exceptional that it raises exceptional dilemmas, but that in fact, there is no dilemma to speak of. It’s all in my head. Again, that could very well be the case. Yet none of this means that the third option, namely that I am right in feeling that I am in a somewhat unusual position among my colleagues, is necessarily wrong. And I think that perhaps I can explain why my dilemma is, well, if not entirely unique, then at the very least more immediate and present.

Because this is where the difference lies: experts on healing practices in Ghana are expected to be social anthropologists. It’s quite unlikely that they will be anything else except social anthropologists (well they could be local healers, of course, but that’s a whole different story). And so when a person becomes an expert on healing practices in Ghana, they’re entering a very well-defined social role; hence the ready-made conference titles, specific journals and so forth. Yes, there would be other experts in the field; cultural psychologists, ethno-botanists, folklorists etc. But the social anthropologist’s position in that particular setting is more or less undisputed. Their authority as experts on healing practices in Ghana is grounded in their disciplinary tradition and is pretty much taken for granted.

But when a social anthropologist, such as myself, is studying autism, that’s a whole different matter. And I’m not saying autism is uncharted territory for people of my discipline (it’s not), only that our authority in this area is very far from established. Experts on autism are, traditionally, psychiatrists, psychologists, neuroscientists, geneticists, speech and occupational therapists and educators – and that’s just one brand of experts, namely those coming from the world of academic research. So when a social anthropologist – and I’m speculating here – makes a claim about autism, it is never merely academic; instead, it is very much political. It is an unapologetic attempt to put one’s foot in the door, into a room already fully occupied by others. It requires him or her to cry out almost explicitly – “I have something to say about autism, and I assert the authority to do so”. This, as far as I can tell, is quite different than if this same anthropologist was studying healing practices in Ghana, they would not only be happily invited into the room; they would be the one guarding the door.

So my dilemma is not just an intellectual one. Rather (as is so often the case) it is a social and political one, and has everything to do with the system of academic disciplines. Which group do I consider myself a part of? Am I a social anthropologist? Well then why aren’t I doing fieldwork in Africa, for example (some would ask)? Oh, I’m an autism researcher? Well then what’s all this business with participant-observation, relationality, and constructivism (some would ask)? Occupying this position of in-betweenness forces me, it would appear, to choose sides. But even if I do choose just one, there would be some explaining to do on my part. And seeing as I actually want to occupy both positions, I need to work all the harder to justify my claims and arguments, positioning them both within the discipline (social anthropology) and within the field (autism research). Which if not an insurmountable challenge, is definitely something that takes some effort.

Anti-Psychiatry and the Neurodiversity Movement

I just finished reading this excellent article by Nick Crossley about the anti-psychiatry movement (the article is behind a paywall, unfortunately). It’s funny – I’ve heard that term, ‘the anti-psychiatry movement’ tossed around so many times that I mistakenly came to believe that I knew what it meant. Having read Crossley’s article, I realise that I actually didn’t. Well, not really, anyway. At any rate, it got me thinking about some of the similarities that might exist between that movement and the current neurodiversity movement. But before I get to that, a bit about the article.

In a nutshell, Crossley offers a really useful social and historical review of the anti-psychiatry movement as it emerged in Britain in the 1960s and 1970s. He seems somewhat enamoured by one particular figure who the movement apparently centred around: a certain R.D. Laing (not to be confused with the contemporary American entertainer Artie Lange – not that anyone was going to, of course. But seeing as I already went there: if you can stomach some really filthy language, and you are not easily offended, check out this comic, if only for his hilarious and often unsettling recollections of – until quite recently – being a heroin addict).

Whether the history of the anti-psychiatry movement is necessarily best told through the story of R.D. Laing, or if this focus is simply the result of Crossley’s fascination with this character, I do not know. And anyway, as Crossley himself writes in the beginning of his paper, you can’t ever tell every possible angle of a story; you simply need to choose that one piece of the story which you want to tell the most. And in this case, Crossley made a great choice, because this really is a fantastic read. And R.D. Laing really is a fascinating figure. Do a little reading about him if you don’t believe me.

But anyway, obviously the anti-psychiatry movement can’t be credited to just this one man, brilliant and charismatic as he may well have been. In fact, Crossley’s main argument is that Laing’s ideas would never have caught on – could never have caught on – if the social, cultural, political, historical, and even disciplinary conditions weren’t “just right”. The conditions were ideal, though, right then and there, and consequently Laing’s views made sense to people. Had he had those ideas 10 years earlier, they might never have been of any interest at all to anyone. In fact, had he had those idea 10 years earlier, he may never have had them in the first place (a bit of a paradox there, you know what I mean), because the conditions wouldn’t even have been right for him to be having those thoughts in the first place. You see my point?

In this sense, Crossley resolves the structure vs. agency debate as well as anyone can, really: individual human agents operate within an existing structure, he says, and they are also, to a large extent, products of that very structure. Individuals do have the power to shape society, sometimes even to change it; but this can only ever happen within the limitations posed by, and the possibilities afforded by the existing social structures (themselves, of course, prone to be shaped and changed by individuals… and so the game goes on and on).

So while he does focus on R.D. Laing the person – what it was that made him, and consequently his ideas and influence unique among his peers and in that particular place and time – what Crossley is saying is that what allowed these ideas to grow and become as influential as they did was the specific social and historical context from which they emerged and in which they were received. More specifically, Crossley is referring to: (1) the extremely powerful and fiercely uncompromising state of the discipline of psychiatry at that time; (2) the advent of the political new left in Britain; and (3) the emergence of the 1960s counter culture, whose members were all too happy to accept and appropriate a philosophy that viewed psychiatry as an instrument of political power, utilised to control, in both obvious and subtle ways, the bodies and minds of the masses.

So yeah, reading this paper led me to think about the parallels between the anti-psychiatry movement and the neurodiversity movement. There are quite a few similarities here (the most important one being that both movements are extremely varied and heterogeneous, so please excuse my gross generalising and simplification). Both movements are very critical towards the medical construing of neurological variation as diseases or disorders. And both movements call for de-medicalization, to some extent at least. Relatedly, both movements tend to view society as the locus of mental illness rather than the individual; or in other words, they share the notion that to reduce individual suffering, one must target the ‘pathologies’ found in society and it’s institutions, not those imagined as properties of the individual. And importantly, both movements present an agenda that is as much political as it is academic, if not more so: power hierarchies, namely who gets to say what about whom and why (e.g. money, influence, hegemony), feature prominently in both movements’ view of things.

And yet – and do correct me if I’m wrong – it seems that the neurodiversity movement isn’t gaining as much popularity as the anti-psychiatry did back when. Sure, it’s everywhere when you look for it, and every newspaper and magazine features the odd shocked article where it reports that ‘that’ perspective exists (rarely crediting it as being as equally valid as the generally accepted medical view of mental conditions), but it doesn’t quite seem to even get close to the wide reaching, near-world-changing popularity of its predecessor.

Why is that? Given the unbelievably impressive array of authors and speakers promoting the neurodiversity paradigm, I suppose it would make sense to shift our gaze away from individual agents and look for answers instead in the all-powerful ‘context’: the systems, institutions, discourses, disciplines – in short, society. There it would be ‘decided’, in history’s tribunal, whether an idea will change the world or destined to become a small footnote.

So, what? Isn’t society capable and willing to accept the neurodiversity paradigm as a valid alternative to the biomedical model of mental illness? Can’t our existing discourses entertain this network of ideas? And aren’t society’s institutions – medical, legal, educational, legislative – able to adapt such notions into their heavy, complex and necessarily slow moving mechanisms?

Maybe they are, maybe they aren’t. The thing about social structure is that it constantly changes. What’s true today night not necessarily be true tomorrow. So, time will tell, I suppose.

Related Posts:

How to Visualise Autism?

I very recently presented a paper to a group of my colleagues (that is, a bunch of PhD students in social anthropology, such as myself) at a conference. I’m not going to go into too much detail about the topic of the presentation, as this isn’t what this post is about, but maybe I’ll just give you the main gist of my argument, in case anyone’s interested.

I basically said that to claim that ‘many autistic people find it difficult to recognize, manage, or express their emotions’ might well be true, but it’s also very inaccurate. I said that we need this statement to be our starting point, not our bottom line. I made the point that it’s never enough to say “this person can’t manage their emotions”. Instead, we – and by ‘we’ I mostly mean researchers, but potentially anyone – need to ask why this person can’t seem to recognize, manage or express their emotions. And I said that “because s/he’s autistic” is never a good enough answer. Emotions, I said, are very complex processes, that involve one’s brain, one’s body, one’s memory and experience, one’s social environment and upbringing, and one’s sensory input. So really, any discussion about emotions has to take all these different factors into consideration. It’s hard work, of course, but anything less would be pointless.

Anyway, that’s more or less what I had to say. I intend to pursue this line of thought over the next year or so, and I’ll try to keep you posted about where this is headed.

What I do want this post to be about is something a bit more mundane, but interesting nonetheless. Here’s the thing: while I was preparing my talk, I tried to think about what I should put in my PowerPoint presentation. Presentations – or so claim the experts – should be accompanied with some form of visualization. These are supposed to provide another focal point for the audience, making it easier to concentrate, and appeal to their sense of sight while the speaker tends to their sense of hearing, which supposedly has the effect of making the whole thing more interesting. Or something like that.

Anthropologists are lucky, in that they often get to accompany their presentations with beautiful pictures from far away countries; dramatic landscapes, interesting architecture, curious festivals, and exquisite costumes. Sometimes, interesting or unexpected contrasts do the trick, for example an elder from a tribe of hunters-gatherers using a smartphone, or devout Muslim women burning off calories on the treadmill at the gym. Or how about this highly recognizable photo? These are often tricks, of course. A Mongolian rural elder holding a smartphone might mean nothing more than that he was handed a smartphone a minute earlier. These types of pictures may well just be creative ways to appeal to the most basic human tendency to admire – or revere – that which is different, unexpected or new. But so what? Everyone likes looking at nice things. And if a beautiful image helps you tell a story, all the better.

But as I went through my mental image-bank to try and figure out what I might use as visual references in my own presentation – about autistic adults in the UK – I very quickly realized that in fact I don’t have any such images. I took zero pictures during my fieldwork. And even if I did take photos, I would never display them publically, because my interlocutors’ anonymity is a very important concern of mine. But even, say I could find a way to get around that, like, for example, showing a picture of a person whose face isn’t shown. Fine, ok, but still; what am I showing, exactly? A picture of a person whose autistic? As if her hair, clothes, or – what, exactly? – tell any story at all about this person as someone who is autistic. It would be meaningless. Just a picture of a person.

I’m reminded of the picture that’s displayed in the English Wikipedia article on autism. When I was just starting out in the field, I took endless trips to that Wikipedia article for background and general reference (the merits and many shortcomings of using Wikipedia as a source on autism is an issue for another post. At any rate as a novice in the field, I was unaware of the many issues this presented, and found it very useful). If you visited that article more than once or twice, you probably know what photo I’m talking about: a little red haired boy, with mostly his back to the camera, standing in front of an open cupboard and stacking cans in a high column, reaching as high as the boy’s head.

I’m actually quite amazed by how long this image has stood there, uninterrupted.

I do like it, though. It may just be me, but there is something very empathic about it. This boy is enjoying himself (I imagine) by doing something that might be slightly unorthodox, but so what? I love that the photographer just lets him have that fun, not interrupting him, not even to face the camera when the picture is taken. The scene sort of makes me want to sit beside this boy and make my own column of cans. Or maybe even, if he lets me, make one together.

The person who took this photo (I did some detective work… Couldn’t resist. And yeah ok, this information is just written there in the file page, so it’s very lazy detective work) is the boy’s mother, Nancy J. Price. Apparently she’s a writer, among many other things, and you can see her webpage here. She took this photo in 2003, which would mean the small boy should be 12 or 13 years old. And wait a minute while I look… Yes! What do you know? In her webpage there are some current photos of her now teenage son, whose name is Quinn by the way. They’re there under the heading ‘My Favorite Face of Autism’. How can it not be? These are priceless.

But returning to the topic at hand, can there really be a ‘face of autism’ from a broader point of view? (That is, not that of a mum). Honestly, what would it even look like? Would it be a child or an adult? A boy or a girl? Man or woman? White or black? Would it be a university professor or an artist? A sci-fi fan or a social activist? Would they speak, sign, type? Would they be happy or upset? Lonely or surrounded with friends?

Invariably, any choice as to how to visualize autism would be problematic. It would create a bias, perpetuate a stereotype, deflect attention, or just create controversy. The very feature of autism, as far as I can tell, is diversity.

I eventually gave my paper without a PowerPoint presentation, and instead I just let the text – heavy with quotes from an autistic interlocutor of mine – to speak for itself. It worked out well, I think, but I can’t help but feel that there’s something I’m still missing. That by avoiding the issue I’m not doing it any justice.

Any ideas?

Related Posts:

How to Write about Autism (or any other group, for that matter)

Update: Apparently since I’ve written this post the article in question has been removed. That’s very good news. I’m curious what led to it being removed, though. Was it the author’s choice, or was it a decision made by the people at Psychology Today? If anyone has any insights about this, I’m happy to hear them.

Recently, on PsychologyToday.com, a blogger and career advisor by the name of Marty Nemko, who also holds a PhD in educational psychology, wrote ~~this~~ an article where he offers some suggestions on how to help people with Asperger’s syndrome find jobs. Many found this article offensive and devaluing of autistic people, and subsequently expressed their anger and concern on various platforms – including this facebook event. As a response, Dr. Nemko added an update to his article, defending his position while implicitly accusing those who criticised it as being easily impressionable, not representing others in the autistic community, and of actually hurting the chances of autistic people to find work. His addition is, to be honest, much worse than the original article itself.

The prejudice and misconceptions in his claims have been discussed extensively online. Gladly, there are quite enough opinionated, eloquent, and persuasive people in the autistic community, and so my own contribution might very well be redundant. Still, inspired by Dr. Nemko’s poorly written article and the way it was received, I thought I’d share some of my own realizations as a neurotypical social anthropologist writing about autism, on how to – well – write about autism. This is by no means an exhaustive list; but it does point to, I think, some of the most disturbing errors often made by people writing about autism in the media and in the academy.

If you feel I left out something important, if you feel I’ve made mistakes myself, or if you have any other contribution to make to this discussion, I’m very happy to read your thoughts in the comment section. So, how (not) to write about autism (or any other group, for that matter):

You want to help people? Help them on their own terms

“Helping People with Asperger’s Syndrome or Autism Find Work” is the title of Dr. Nemko’s article. Fair enough, I suppose, but why don’t we take a few moments to ponder over the meaning of this concept of ‘help’.

Help is often thought of in very positive terms, isn’t it? It denotes altruism and empathy, reaching out for someone in need even at the expense of one’s own self-interest. But is that really always the case? I mean quite often, ‘help’ is merely used as a means of earning influence or respect, or just as a way to make money. I’m not saying that profiting from helping others is necessarily immoral, mind you. I am saying that it’s not necessarily unselfish. The details – e.g. who’s helping whom and in what way – matter.

There are many political and social implications to ‘help’ that we should constantly be mindful of as well. When someone in a position of power – political, financial, social, whatever – decides to help someone disadvantaged, the inequality between them, the same inequality that led to their respective positions in the first place, is both strengthened and made painfully visible. This might be inevitable, and I certainly don’t mean to imply that help is necessarily a bad thing for this reason. But when offering our help, even to those who seem to greatly need it, we need to be conscious of how we use the power that we just won over them. Throwing small change at the feet of a homeless person does much more harm than good; it is humiliating and degrading. “But those things aren’t important when they obviously need money for food!” you might argue. Well, in most likelihood, they could do with some cash in their pocket, yes. But does this contradict their need for respect, for decency, for acknowledgement of their humanity?

This was an obvious example. Quite often, the mechanisms of degradation to do with ‘help’ are infinitely more subtle. This doesn’t excuse us from our obligation to be mindful of them. The goal should be to balance, as much as possible, the unequal power relations between those in a position of privilege and those in a position of need. How is that done? By acknowledging that those who are disadvantaged, disenabled or marginalized have their own idea of who they are, what led to the position they’re in, and most importantly – what should be done about it. Forcing one’s own idea of what another person or group of people need is not help. It is arrogance and audacity. And it’s no surprise that people are angered and offended when such behaviour is directed at them.

But how would you know what their ideas are about what sort of support they need? It would take such hard work to find out! Why yes, yes it would. And if you can’t be bothered to do that work, perhaps you should reconsider your desire to ‘help’ them in the first place.

But still, there is just so much information out there. It is sometimes difficult to tease out what’s relevant and what’s not, what’s valid and what’s false. I mean, using Wikipedia as one of his sources was a very poor decision by Dr. Nemko, but the rest of his sources are not inherently bad sources of information (Autism Speaks is actually a terrible source for information about autism, for various reasons, but in order to know that, one still has to do some amount of research. He would only then learn that quoting it as “the leading organization advocating for people on the autism spectrum” is so grossly inadequate as to invalidate all his further claims almost instantly). Dr. Nemko does mention in his update to the article that he spent 4 hours with a group of over 40 people with Asperger’s, and spoke lengthily with the group leaders as well as some members. Indeed, if what he had heard from these people corresponded with the Autism Speaks approach, for example, how could he ever have avoided making the mistakes he did? Well, this leads me to my next piece of advice:

Never assume the group you’re writing about is homogenous

Every group of people has differences of opinion among its members. These might be subtle differences, or they may be huge and insurmountable. It’s easy to mistakenly think that if you heard one perspective, or indeed ten perspectives, then you know the whole story, but that is never the case. If you’re going to write about a large population, you must assume that such differences exist, and – this is crucial – you must actively seek out these differences. Don’t stop researching until you find a controversy, and then try and determine how deep rooted and widespread it is.

I’d like to think that if Dr. Nemko was aware of the perspectives of those who subscribe to the neurodiversity movement, he would have written a very different article; if not different in its basic premise, then at least more respectful and more informed, less prejudiced and not quite as offensive.

As it turned out, Dr. Nemko did at some point become aware of the fact that not everyone sees autism as a disability, that some (I would say many) people are actually outraged by the notion that cleaning cars is a career that people with Asperger’s should aspire to, or deeply insulted by the claim that “scavenging through garbage cans” is just one of those “unusual habits” that people on the autism spectrum seem to enjoy. Better late than never, I suppose, but instead of retracting his article, apologizing and rethinking his engagement with the issue at hand, he chose a different course of action: he defends his questionable position by attacking those who found it offensive.

His attack is based on the premise that his critics represent a small few, an insignificant minority; that they were driven to criticise him under a false pretence (namely that his article was poorly sourced; an accusation that was a) absolutely true, and b) not even the main issue); and therefore can be – if not completely ignored – swiftly brushed aside. Let us look beyond his arrogance and unshakable self-conviction. Here’s the important thing: You don’t get to choose who represents the group you’re writing about. You’ve come across members of the group who feel you’re completely wrong in everything you say about them? They’re probably right. If you couldn’t anticipate their angered reaction, you’re obviously just not sufficiently familiar with the field to write about it.

Do not take liberties in defining the people you write about

Dr. Nemko uses the term Aspie very freely. In his update, he justifies this by explaining that he was told this was the term most people with an Asperger’s diagnosis preferred. I’m not worried whether that’s actually true or not; I don’t think a proper survey was ever held, and either way, this is likely to vary with age, gender and other factors.

When a person with Asperger’s identifies as an Aspie, he or she is making a conscious choice – a political choice – to adopt the label of Asperger’s in a very particular way. To raise certain connotations. To emphasize some aspects of their neurology; indeed of their being. It’s not up to us NTs to impose this label on everyone with an AS diagnosis. This is a discourse from which we are more or less excluded, and for good reasons. Similar (though different) examples exist in more or less every other minority group.

I imagine hearing some readers sigh with exasperation, “enough with this political correctness already! I should be allowed to call people what I want”. No you shouldn’t. And if you don’t understand why, you haven’t done your research, and you shouldn’t be writing about this group of people in the first place.

(A note: When I write about people on the autism spectrum, I often refer to them as autistic (or otherwise as “people on the autism spectrum”, or simply “on the spectrum” in short). This might seem to contradict the point I just made. But here’s the thing: it’s been my experience that by far more people are offended by “person with autism”, than by “autistic person”. This is because the former implies that autism is something external to the person, while the latter implies that autism is an important part of who that person is. There is no consensus in this matter; but I’ve been given the impression that while some find “autistic” distasteful, few are offended by it. However, a great many people find “person with autism” extremely offensive, and I’ve been repeatedly told this was, in most cases, preferable. See, for example here and here)

Back to the article… It gets worse: “Aspies … are often intelligent, kind, and eager”. And elsewhere: “most Aspies are friendly”. What might induce statements such as these? How can a population of millions be characterized by such simplistic terms? Need it be said? People with Asperger’s are a very varied group of people. Yes, many of them who I’ve met are extremely intelligent and often kind. Others less so. I’m sure there are many out there who are neither. I’m not just pointing out the inevitable inaccuracy of this statement – I’m troubled, once again, by its implications. It implies that there’s “us” and “them”. And that “we” are in a position to pass moral judgement on “them”.

And it’s also extremely stereotypical. Are Black people intelligent? Are people who use wheelchairs kind? Are homosexuals friendly? These statements are not just absurd, they’re profoundly offensive and condescending.

Do not mention prevention or cure for autism as desirable technologies

I was going to simply type “just don’t do it”, and leave it at that, but obviously this needs some further clarification, seeing as folks like Dr. Nemko still feel it is proper to express wishes that a cure for autism be found. It’s not. Here’s why: regardless of whether autism is seen as a disability or not, it is nearly always experienced by autistic people as an inseparable part of their very being, of who they are. To say autism should be prevented, is telling them you wish they had never been born. To hope for an autism cure, is telling them you would have chosen to have them killed and replaced by someone else entirely – if only you had the technology to do so. It is categorically hurtful, insulting, immoral and cruel. So… Just don’t do it.

I could probably go on, but I’ll leave it at that for now. Maybe I’ll just end with this quote from the author of the article:

“If reporting based on a degree of research well beyond what’s conducted for most blog posts generates a firestorm call for it being censured and censored from activists believing that autism is a difference, not a disability, fair-minded writers, indeed any fair-minded people considering where to devote their efforts will–unless they’re masochists–turn their attention to issues other than disability, which frankly, in light of your comments, I plan to do. I’m sure you agree that’s a good idea.”

In this case, I quite agree with Dr. Nemko. If all he has to say about the vast amount of legitimate, well-articulated and detailed critique he received for this article is “you’re an ungrateful lot and I want nothing more to do with you”, then by all means! Not writing about disability is, in his case, probably a very good idea indeed. What do you think?

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.

Bartleby the Scrivener (Part 2 of 2)

In my previous post I began to discuss the wonderful short story by Herman Melville, ‘Bartleby the Scrivener’ (You can find it for free online, on Project Gutenberg.) Following a great many caveats, I suggested that to assume that Bartleby was autistic (had he been a real person living today, that is) is not an outrageous notion. His many eccentricities, as these are noted and interpreted by the (neurotypical) narrator, seem to indicate a neurological-developmental difference in Bartleby; one that today would very likely be deemed an autism spectrum condition.

Also in that post (oh just go ahead and read it, it’s not very long), I mentioned the claim that Melville himself may very well have had the traits that would qualify him for an autism diagnosis today. If that is indeed the case, then Bartleby is essentially a story of an autistic person, told by a neurotypical narrator, who is in turn written by an autistic author. It is autism seen from the eyes of neurotypicality as seen through the eyes of an autistic person. This makes for a fascinating focus for a blog on autism from a social anthropology perspective; a perspective that emphasizes social relationships and social dynamics, as well as the different points of view that people from various social, cultural and – yes – neurological groups have on themselves and of others.

So let’s begin. Finally.

Possibly the most prominent theme in Bartleby is the lawyer’s/narrator’s constant and ongoing struggle to understand Bartleby. Initially merely feeling perplexed and baffled by Bartleby’s determined yet polite refusal to adhere to his boss’s requests (“I would prefer not to”), the lawyer realizes that this is not done as a provocation; it is not an act of impertinence or disrespect. This realization makes it easier for him to excuse Bartleby’s disobedience. But he still doesn’t understand why Bartleby refuses. Choosing to make no further assumptions without compelling evidence (very anthropological of him), he decides the best course of action would be to simply ask Bartleby. Surely, if the scrivener has good reasons to refuse to do his job, he shall share them with his employer. But no such luck. “I would prefer not to”, Bartleby once again replies. And again. And again.

This word, “prefer”, which appears in various forms 47 times throughout the story, seems to fascinate Melville as the characters in his tale all take the habit of using it themselves quite frequently. Not unaware of the massive effect that this single word had on him and his other employees, the lawyer tries to make sense of its gripping influence – but unfortunately, to not real avail. So just to have a bit of fun, I’ll give it a go myself, if you don’t mind: “Prefer” seems to denote a somewhat flexible approach to a matter. A personal inclination that’s not bound by any rule or law. As such, it is seen as more or less contingent; preferences change. But Bartleby’s preference doesn’t change. Ever. Not even when his life is put on the line, and he is imprisoned and at the point of near starvation. Unlike other people’s, Bartleby’s preference is a solid as a rock. Moreover, when someone has a preference, it is expected that there be a reason behind it. “Why do you refuse?” inquires the lawyer. “I would prefer not to”, Bartleby frustratingly repeats himself. Without an apparent reason behind it, and without a prospect of it ever changing, Bartleby’s preference gains almost mystical powers, against which there is nothing the lawyer feels he can do. Had Bartleby simply “refused”, he would have been instantly let go and be over with, as the lawyer himself admits. Had he stated a reason for him preferring “not to”, he may have won his employer’s sympathies, and been allowed to loiter idly in his office to his heart’s content. But he had done neither; thus, unable to fully resent Bartleby or fully accept him, his employer is left in a perpetual state of liminality – suspended between empathy and anger, kindness and cruelty, care and pity, determination and inaction.

There is something very telling about the fact that it is the lawyer, and not Bartleby, who seems to struggle most in this story. It is him who constantly questions and negotiates his own morality, on the basis of his relationship with Bartleby. Bartleby, on his part, is quite serene. He knows who he is and what he wants; and it is the very fact that he is so resolute about this that arouses such extreme and contradictory emotions in the lawyer. With which of his two main characters does Melville sympathize more, I wonder? Hard to say, really. While diametrically opposed in almost every way, both the lawyer and the scrivener are portrayed as generally positive characters. Well if that’s the case, what is the problem? What is the source for all the tension, drama, and ultimate tragedy that occur in the story? Is it Bartleby’s fault, with his eccentric habits and preferences (which include not doing the job he has come to do)? Not really, no. Melville never seems to suggest it is. So is it the lawyer’s inability to elicit a response from Bartleby? To force an answer? To make him do his job? No, he’d done all that was in his powers, surely, and Melville never implies otherwise. So what is it then? Who’s to blame? Where’s the fault?

*
I suggested previously that we might assume that Bartleby is autistic. It is an inaccurate assumption, to say the least, but it will do the trick, as it were, to help us understand a very simple – though not nearly adequately known or accepted – truth about autism. Let us imagine that Bartleby represents autistic people as a whole. And that the lawyer represents neurotypical society.

Autistic people are not sufficiently understood by neurotypicals (much like Bartleby is not understood by his boss). That much is more or less a fact. Curiously (or not), there is seldom any doubt among neurotypicals as to the source of this shortage of communication. The question “where’s the fault” is answered so hurriedly in autism research as to hide the fact that the question was ever worth asking. “It is in autistic people!” neurotypical society seems to enthusiastically proclaim: “I don’t understand those people”, they say. “And worse, they don’t seem to understand me! So there must be something wrong with them”. Researchers then go about looking for the specific location and source of this so-called “impairment” – is it in their genes? Is it in their brains? Were they exposed to pollutants? Infections? Abuse?

Damian Milton, an English sociologist, is perhaps the most eloquent author to frame the problem in a very different – and quite more productive – way; a way that is not dissimilar from what appears to have been Melville’s approach to the matter 150 years ago. Yes, neurotypicals don’t always understand the motives, intentions, and behaviours of autistic people, Milton asserts in his excellent article titled “On the ontological status of autism: the ‘double empathy problem’ (2012); But at the same time, autistic people don’t usually understand the motives, intentions, and behaviours of neurotypical people, either. So, here are two groups who regularly fail to communicate successfully between them. What, other than prevailing discourses about normality as well as unequal power dynamics between those deemed “normal” and those deemed “deviant”, would compel anyone to immediately assume that the problem is fixed inside autistic people? This is an entirely false view, Milton argues. The problem is not fixed anywhere; it is simply not specific – It is not bounded within autistic people nor in neurotypical people. Instead, the problem is relational. The aforementioned communication problem merely lies in the relation between autist and neurotypical; between autism and neurotypicality. Only once we acknowledge this, can we start seeking for solutions.

Milton calls this the Double-Empathy Problem, and he defines it thus:

“The ‘double empathy problem’: a disjuncture in reciprocity between two differently disposed social actors which becomes more marked the wider the disjuncture in dispositional perceptions of the lifeworld – perceived as a breach in the ‘natural attitude’ of what constitutes ‘social reality’ for ‘non-autistic spectrum’ people and yet an everyday and often traumatic experience for ‘autistic people’. (Author’s concept and definition)” (Milton 2012:884)

Quite a handy concept, don’t you think?

I want to make a couple of notes on this. First, mind the part that says “…perceived as a breach in the ‘natural attitude’ of what constitutes ‘social reality’”. That the definition states that the breach is perceived, rather than simply ‘is’, is important. It conveys an important message – the reality of autism (or “The Ontological Status of Autism”, as the article heading reads) is co-constructed in the social sphere by social actors; it is not static or inevitable, but contingent and fluid. Also note how ‘natural attitude’ is put into scare quotes; it is used almost ironically, I think, to indicate that there is nothing “natural” or permanent about “social reality”; but that it is instead constantly negotiated and changing. At any rate, it is certainly naturalized; namely, it is made to appear natural, but really, it is a social construct if there ever was one! Alas, the tall pile of construction rubble that was left behind is regularly swept clumsily under the rug.

Finally, and perhaps most importantly, Milton draws our attention to the fact that the double-empathy problem affects autistic people much more frequently, and much more severely, than it does neurotypicals. For NTs, the breaking down of communication with an autistic person is an anomaly, and may be frustrating. For the autistic person, it is everyday life, and it may very well be traumatizing.

Shall we have a quick go at seeing how this approach helps us understand the story a bit better? Yeah, why not.

The story of Bartleby and the lawyer does not occur in a vacuum – though we are given this impression up until the very last couple of pages. Only then, are we made aware of the fact that Bartleby has a history. Before coming to work on Wall-Street as a scrivener, Bartleby had worked at the dead-letter office; an office dedicated to processing broken communications: messages, gifts, and expressions of emotion and intent that never made it to their destination. A beautiful metaphor, this is the sad life story of Bartleby. The lawyer constantly asks the reader for their sympathies; oh, how he struggles to make sense of Bartleby’s seemingly illegible behaviour! How hard he tries to accept Bartleby, to help him, to save him. Yes, he does. And it is admirable. But let us think of Bartleby. What to his employer was a single frustrating experience, would most likely have been an excruciating recurring theme in Bartley’s entire life. Broken communications, undeliverable messages, intercepted gestures. Time and time again. If he had finally grown weary of futilely trying to be understood, right up to the point of giving up altogether; can we blame him?

Damian E.M. Milton (2012): On the ontological status of autism: the ‘double empathy problem’, Disability & Society, 27:6, 883-887 http://dx.doi.org/10.1080/09687599.2012.710008

Bartleby the Scrivener (Part 1 of 2)

In a previous post, I discussed the claim that autism is a social construction; that in many ways, it is a product of modern society; and that autism hadn’t existed – in fact that it couldn’t have existed – before the diagnostic label known as autism had emerged. This is a somewhat controversial claim of course, and so it should be properly understood before we go any further. First, I should make it clear that the social constructivist perspective to autism does assert that in all likelihood, the various core biological and neurological aspects that are currently associated with as autism have been around since man existed. Yes indeed – there would always have been those people who experienced extreme sensitivity to sensory stimuli; who thought in patterns or pictures rather than in symbolic language; who found social interactions difficult, confusing, uncomfortable, or scary. None of this is new.

So to say that autism hadn’t existed before it was identified is merely meant to acknowledge and emphasize that the institutions associated with this specific label hadn’t yet existed; that the social and cultural ideas, stereotypes, beliefs, expectations and misconceptions regarding autistic people hadn’t yet existed; that relevant therapies and special education programs hadn’t yet existed; and that autism as a source of identity and understanding of one’s self hadn’t yet existed. So in the mid-1800s, for example, you simply couldn’t have been autistic. You might have had all the traits that would qualify you for an autism diagnosis today, for sure, but at the time, these traits would have been ascribed with very different meanings, interpreted differently, and framed differently by both you and others.

But the question arises: how would such a person been labelled back then?

An interesting way to try and approach this question is by asking how present-day autistic people – diagnosed late in life – were seen, labelled, and treated before they received their autism diagnoses. This is a question I often ask my interviewees, and the answers I receive are as interesting as they are varied. For an idea of the sort of answers I’m getting, it’s enough to take a look at this great post by Misplaced Mermaid (awesome blog title, btw – I like the mermaid metaphor better than the alien metaphor, though they’re admittedly quite similar) to appreciate just how many words, labels, categories, titles and adjectives are used to describe someone who for various reasons, just doesn’t quite “fit in” (of course, “doesn’t fit-in” is just another vague sort of label, isn’t it?). This is helpful in trying to imagine how autistic people (or, more accurately, people who today would have been labelled autistic) would have been seen and labelled before the category of autism ever existed.

An important thing to remember is that autism – fluid and dynamic as this category may be – is in fact quite fixed and steady compared to the labels one would have been ascribed with prior to the emergence of this label. Before, a person would have been said to be stupid by one group of people, and brilliant by another; labelled introverted by one, and outspoken by another; deemed crazy in one context, and holy in another. This is why so many people find relief and comfort in being diagnosed with autism later in life – finally they can stop negotiating a thousand different labels – some of which are actually in contradiction to one another – and settle on one single label that is supposed to replace all the others (of course, it doesn’t always fulfill that purpose).

But anyway, I digress. My point is this: claims that various historical figures were autistic need to be taken with a pinch of salt, as they say. They’re never entirely accurate. Sure, it’s an interesting intellectual exercise. And yes, it has very important political implications (namely, that autism can be a valued form of difference rather than a deficit or impairment) as well as research implications (e.g., that vaccines or modern-day pollutants do not cause autism). But given the very different social and cultural contexts in which people of the past lived, autism – as we currently understand and frame it – is just not a relevant category. It is an anachronism. Sort of like saying Jean of Arc was a feminist, or that Julius Caesar was Italian.

Right. Glad that’s over with. This very long introduction was merely a caveat for what this post is actually meant to be about – Herman Melville’s marvelous short story published in 1853: Bartleby the Scrivener.

It was recently mentioned to me that Herman Melville, the American novelist, has been said to be autistic (or that he had Asperger’s syndrome – though given the intrinsically inaccurate nature of both these claims, for the reasons outlined above, this is nitpicking). You can read about this claim here if you’re interested (“Writers on the Spectrum” by Julie Brown). It makes for an interesting read, surely, especially if you have read and loved Moby Dick; there are definitely parts in this novel when even the most enthused reader must stop for a moment and note that the author was really, really, really interested in whales. Like – really.

No, no – this doesn’t prove a thing. In mentioning Melville’s apparent obsession with whales I wasn’t intending anything but to make a humorous anecdote. Nor does Julia Brown’s engagement with Melville’s rigid breakfast habits, late onset of speech, preference to withdraw from the company of others, awkward social demeanor and difficulties with making eye-contact indicate anything but a curiousity… Ok, enough with this cuteness. Let’s face it: If the statements about Melville are correct (and I’ll leave this to be determined by others much more skilled and enthusiastic about this sort of thing than I am), then it’s a safe bet that had he been alive today, he could have safely been said to be autistic. And why not? Melville is certainly a respectable addition to the seemingly ever growing “historical figures with Asperger’s” club. Granted, I personally have no urge or desire to act as a gatekeeper for this club. I’m quite happy to sit in the stands, and quietly sulk over the inaccuracy of it all.

If Melville had indeed had all the traits that today would have indicated an autism spectrum condition, then it is probably not a coincidence that Bartleby the Scrivener, the protagonist of Melville’s story that bears his name, is himself so stereotypically autistic. Except he can’t be stereotypically autistic, because autism hadn’t existed. Which means that the autism stereotype (or rather, in this case, the Asperger’s stereotype) hadn’t existed. So Bartleby is not a stereotype. And yet so many of the traits with which Melville describes him are commonly associated with Asperger’s. Here are a few quotes that I highlighted from the book (page numbers refer to the Kindle edition):

“Meanwhile Bartleby sat in his hermitage, oblivious to every thing but his own peculiar business there”. – 178-178

(Bartleby tends to get extremely focused on his work to the point of being oblivious to his surroundings)

“His late remarkable conduct led me to regard his ways narrowly. I observed that he never went to dinner; indeed that he never went any where.” – 179-180

(Bartleby withdraws from society, and avoids social gatherings and interactions)

“He lives, then, on ginger-nuts, thought I; never eats a dinner, properly speaking;” – 183-184

(Bartleby is a picky eater; in fact, he only ever eats this one type of food)

“I had a singular confidence in his honesty. I felt my most precious papers perfectly safe in his hands.” – 224-228

(Bartleby is not inclined to deception or theft)

“He did not look at me while I spoke, but kept his glance fixed upon my bust of Cicero, which as I then sat, was directly behind me, some six inches above my head.” – 299-301

(Bartleby avoids eye-contact)

“”I would prefer to be left alone here,” said Bartleby, as if offended at being mobbed in his privacy.” – 321-322

(Bartleby is uncomfortable with his privacy being invaded)

“If he would but have named a single relative or friend, I would instantly have written, and urged their taking the poor fellow away to some convenient retreat. But he seemed alone, absolutely alone in the universe. A bit of wreck in the mid Atlantic.” – 342-344

(Bartleby is socially isolated)

“Going up stairs to my old haunt, there was Bartleby silently sitting upon the banister at the landing. “What are you doing here, Bartleby?” said I. “Sitting upon the banister,” he mildly replied.” – 481-483

(Bartleby interprets questions literally)

“”No: at present I would prefer not to make any change at all.”” 499-500

(Bartleby is resistant to change of any kind)

That’ll do for now, I suppose. In my post about Lars and the Real Girl, I mentioned how pointless it is to try and diagnose a fictional character. That it’s just speculation, anyhow. I still think it is pointless, but I have to admit that when this character was written at a time when autism hadn’t yet existed, and by an author who presumably would have been diagnosed with Asperger’s had he been alive today – then there’s actually something quite interesting (and confusing) about this sort of speculation. Is Bartleby autistic? How would this question even be properly phrased? It would need to be something along the lines of “assuming that Bartleby was an actual person; and assuming he had been alive today; (and assuming he had access to diagnostic services); would he have been diagnosed as autistic?” That’s a lot of ifs. Trying to resolve this intricate matter in any intellectually honest way would take way longer than I intend this post to be (this post in already way longer than I intended it to be). So I shall resolve this question the same way I resolved my query about Lars and the Real Girl – by tossing aside my objections, and simply proposing this: Let’s assume Bartleby was autistic. It will have to do. Sorry if you feel you’ve been cheated out of a long dialectic over the ontological status of cognitively deviant past fictional characters – but let’s just leave that one for another time.

Oh dear. I’m already at over 1600 words and I haven’t even started making my point about Bartleby yet.

Well then… To be continued.

Bartleby the Scrivener (Part 2 of 2)

Why Should a NT Anthropologist Try to Study Autism Anyway?

Recently, the morality and potential contribution of my project were put into question by a member of the autism community. The main argument laid forward (briefly; this was twitter after all) was that being neurotypical, I could never understand – presumably not even to an extent – what being autistic is like, and so my attempts are inevitably doomed to fail. Not only that, it was suggested that my attempts could actually be harmful, as any desire to discuss autism as an experience – without ever having experienced it myself – are likely to involve at least some degree of Othering; “The ultimate form of othering” was in fact the exact words used. I’ve considered this before, of course, but never had this thrown at me with such explicitness. And I had to admit that this was a very legitimate concern.

Not only that, my interlocutor doubted that my project could in any way be beneficial for the autistic community, as any advancement in the autistic plight to acceptance and understanding can only come from within the autistic community itself, through self-advocacy and social activism.

These very fair allegations stuck with me for the two weeks that have since then passed.

So I decided to take a break from my Autism in Movies series, and write about this dilemma instead.

First, here is my reply to this person via email (with very slight changes):

“Hi …,

Thanks for giving me this opportunity to try and convince you about the possible contribution my research (and others like mine) could have. Like I said in our short twitter exchange, I think that in any field, disagreement is both inevitable and potentially productive. My goal here is not only to try and change your mind – but also to allow you to try and change mine. My ultimate motivation is to understand the various perspectives of autistic people (yes, these are infinitely varied of course). If these perspectives include an objection to the very idea of my research, well, that’s something I’m going to have to take very seriously indeed. But first thing’s first.

Let me start by referring to your comment that the word ‘autistic’ in ‘a social anthropologist trying to figure out what being autistic actually means’ couldn’t be replaced with any other group and still be taken seriously. I disagree, primarily because this is precisely what social anthropology does! It’s about trying to make sense of perspectives, motivations, beliefs, and behaviours that are different from one’s own; I have colleagues trying to make sense of the role of music and dance in the beliefs of Krishna worshippers in India, of how sheep herders in Tibet understand the state and its institutions, and of how homosexual university students in South Korea interpret masculinity. The idea is not to document these groups – hasn’t been for decades. The idea is to properly understand them. What drives them, why they believe what they do, and how they make sense of their lives and their surroundings; in other words, what their experience of the world is like.

My own motivation is similar, but different. People of different cultures differ in many aspects – but their neurology is (presumably) similar. But autistic people and neurotypical people are different in a different way – our brains work differently (again, presumably… and then there are many other differences as well of course, big and small). Questions such as those posed above need to be addressed from a different angle, rethought, and constantly questioned – but I for one believe they are still very much worth asking.

How do autistic people in the UK experience the world around them? How do they experience their own sense of self and identity? How do autistic people experience socializing? How do they experience objects? How do they experience their own bodies? None of these questions have easy or straightforward answers, of course; not even close. It would take a book – in fact it WILL take a book – to only start to try and address them. It will require great care, so as not to generalize, simplify, reduce, fetishize, romanticize, offend, or misrepresent. I have taken a very hard task upon myself; I’m aware of the responsibility this entails.

But I do believe this can be done. No, I will never know what being autistic is like. To do this, I will have had to be born autistic. However, I am convinced that by talking to enough autistic people, asking the right questions, listening very carefully to the answers, reading autistic authors’ books and blogs, spending significant amounts of time with autistic people – I can come to appreciate, TO SOME EXTENT – what being autistic is like FOR THEM.

So how is this helpful? Because few – very few – neurotypical people will ever take nearly as much time to think about what being autistic is like as I do. Because even if they did, they haven’t had the training that I had, which allows me to proceed with extreme caution in this rather delicate task of representing an entire population of people. To consider the various social and cultural factors that take part in making autism what it is. To critically assess research in neuroscience, psychology, genetics etc., and tease out the valuable knowledge from the utter rubbish. I have spent the greater part of 8 years learning to do this. There’s still a lot I don’t know, but I suppose I am still more qualified for this sort of work than many other people. I can’t do it perfectly – I’m going to make mistakes here and there, I’m afraid. But I hope I can do it well nonetheless. Several other people could; But very few others actually DO.

So how IS this helpful? Hopefully, people – NT people, that is: parents, partners, teachers, therapists, researchers, employers, journalists, policy makers – could read my book and understand autism better. Simple as that. Not the genetics of it, or its cognitive mechanisms, or the neurochemistry involved, or the various treatments that are offered. But the actual experience; what being autistic is LIKE. What difficulties this entails. What sorts of satisfaction. In what ways precisely is autism a challenge. In what ways is it a gift. And what society can and should do to minimize the difficulties and allow for people’s individual talents to emerge. Whether you are a parent to an autistic child or the prime minister of a large country – you need to know these sorts of things. It would be my role to try and inform them.

Why shouldn’t autistic people do this work? Well they should, and they do. Often quite brilliantly. In some ways, they do it better than I ever could. My contribution lies in my training as a social scientist, my close familiarity with research methods, social theory, ethics etc.; and in the fact that I am neurotypical, which possibly – possibly – puts me in a position of ally and mediator. Mediation is important.

Finally, you mentioned my study sounds like the ultimate form of Othering. That was a blow!! This is what we (social anthropologists) invariably try so hard to avoid! And it’s always a big risk. I guess all I have to say about it is this: A study such as mine COULD be very Othering. But it doesn’t HAVE to be. It’s not a question of what research you do; but of how you do it.

… “

Out of the many, many concerns my letter addresses, the one I’m least confident about is the part where I explain what my own contribution as a neurotypical could be; and why it was morally acceptable that I should engage in this sort of work. And it is this question that I still most struggle with. Am I not just trespassing on other people’s domain? In choosing autism as my topic of interest, am I merely exploiting autism and autistic people? Is there even a slight chance of me doing a better job at this than someone who is actually on the autistic spectrum?

After all, there are indeed quite a few social scientists who are themselves autistic and already do brilliant work in studying autism from this particular angle; names that come to mind are Dawn Prince-Hughes, Donna Williams, Dinah Murray, Damian Milton, and Rachel Cohen-Rottenberg; most likely among many others. And then there are the many, many self-advocates and bloggers such as Lydia Brown, Kassiane S., Sparrow Rose Jones and others who may not be social scientists per se, but do fantastic work in studying and analyzing autism from a social and cultural perspective nonetheless.

These researchers and thinkers are all brilliant at what they do; they are creative, careful, diligent, honest, eloquent, and passionate. They may be autistic, but if any neurotypical reader finds it hard to relate to their ideas for some reason, the problem is with the reader. Absolutely no mediation is required between the ideas of Dawn Prince Hughes, for example, and a neurotypical reader – despite her making no apologies for her unique style of doing social science.

So what am I doing in this field? What’s my contribution? Where’s the added value of my work?

I suppose for the time being, I can’t really answer this question; I honestly don’t know. But hopefully, by the time I will have completed my research and written my thesis, I will have learned enough, thought enough, and hopefully I will not only have realized but have in fact demonstrated that I am not a stowaway on the autism wagon. That I can contribute. And that, as the principle precept of health care and research mandates, I will at the very least ‘do no harm’. The only thing I can say with any certainty is that the burden of proof, in this matter, lies completely on me.

I would love to hear everyone’s thoughts on this.

Temple Grandin

Temple Grandin (2010)

Temple Grandin is probably the best known autistic person out there; to say that she’s a global celebrity would not be going too far. She has written several bestselling books, she is an extremely respected professional in her field, she is often cited and quoted in all sorts of discussions about autism (popular and journalistic, as well as academic) and she gives frequent lectures and interviews on various media. But maybe the most significant contribution to her celebrity status outside the autism community (and the cattle industry) is this 2010 film which is based on her memoir. The first time I watched this film was when it came out. I knew very little of autism then, and I have never met an autistic person (as far as I knew). And at the time, I loved Temple Grandin. In fact, I have a strong feeling that (warning: cliché) this film was one of the reasons that made me want to study autism in the first place.

I was slightly hesitant before watching it again earlier this week. Was it really that good, I asked myself, or was I simply too naïve back then? Won’t I be terribly disappointed? I’m a bit more knowledgeable about autism now, I’m a lot more suspicious, and I’m also a bit cynical. In short, I was afraid to find that Temple Grandin wasn’t half as good as I remembered it. And seeing as I know something now of the actual person who inspired this film (not personally, unfortunately, but from reading her books and watching her lectures), I was worried of finding that Hollywood – as it often does – had done her an injustice.

I was happy to find I was wrong.

I mean yes, ok, a lot was left out (obviously), and yes, the film came short of offering a complete account of the array of different aspects of autism (again, of course it would), but all in all, I felt Temple Grandin the movie is a beautiful, sensitive, and honest telling of a remarkable story about a truly exceptional person. As far as representations go, I thought the makers did a very good job. The autistic protagonist mostly makes her own choices, and while the love and care of those around her are framed as indispensable for her growth and achievement, these are acknowledged as secondary to Temple’s own intelligence, talent, and formidable sense of self-worth. The makers of Temple were not (as is often the case) rushing to spread some simplistic message about autism that downplays its disabling features, or reducing it to a generic form of mental disability that stands for weakness, dependence, or deficit. “Different, not less” was actually the film’s catch phrase, and the movie remained loyal to this message from the beginning.

In other words, I loved Temple Grandin. Possibly even more so now than when I watched it first.

Temple Grandin was born in 1947, merely 4 years after autism was named and identified for the very first time. In a way, her life story can be said to parallel the history of autism itself.

Often, when people think of autism, they imagine a sort of static quality that exists solely within the confines of the body. A biological condition that if not properly understood by science, it is only because we still lack in scientific knowledge; that the truth is still unveiled, but science is slowly and surely progressing towards this very goal. This is a somewhat narrow view of a much more complicated reality. Like any medical category, and perhaps even more so, autism is as susceptible to historical, social and cultural conditions as it is to biological processes in the genes or in-utero. After all, it takes people to recognize autism, define it, study it, explain it, treat it, experience it, represent it, and make sense of it. And those people come from different cultures, subscribe to different theories, value different methods of inquiry, and have different perspectives about what’s desirable, what’s normal, what’s important and what’s right. As time goes by, as society changes, autism, in a very real sense, changes with it.

Who are those people who arguably have so much influence over an apparently unbending neurological condition? Well, it’s quite a long list, actually. Neuroscientists of various sub-disciplines (cognitive neuroscience, neurophysiology, neurochemistry etc.), psychiatrists, and geneticists usually make up the group in charge of scientific research into autism, which obviously has a massive effect on how it is framed, categorized, understood and treated. Epidemiologists make a huge impact in determining and communicating the prevalence rates of autism. Psychologists are responsible for characterizing its cognitive and developmental aspects. There are speech therapists, occupational therapists and physical therapists who possibly know best which therapies work and which don’t (not that they are all in agreement). There are teachers in charge of instructing and educating autistic children and adults. There are those who provide welfare services, devise policy, and design legislation. There are those who advocate autism awareness and acceptance, and those who advocate the search for a cure. There are those who spend their everyday lives with autistic people, those who love them and know them best, namely their parents, siblings, partners, children or caregivers. There are those who write autism into books, make films, or write about it in newspapers and journals. There are those who study it from a humanities or social science perspective – like me. And ultimately, of course, there are those who are themselves autistic; living, talking, writing, acting, connecting, and making; they are sons, daughters, parents, partners, and friends; some are teachers, writers, researchers and artists; and they have significant influence on how autism is understood, treated, explained, experienced and even performed. Autism is therefore anything but static – it is as dynamic, fluid, and mutable as social categories get.

So wait, who are the real experts then? Well, they all are, but you know what happens when you have too many experts in one place. You get tension, disagreement, and conflict. And autism, with its myriad sorts of experts, is a fertile breeding ground for exactly that. In one of the very best books written about autism (on my opinion, that is), Gil Eyal and his colleagues, a team of sociologists, take a deep and thoughtful look into this field of contention, which they call (and named their book after) “The Autism Matrix”. Give it a read if you have the time. It’s not an easy read, but it’s well worth your effort.

Temple Grandin offers a wonderful insight into how these disagreements between the various sorts of experts come about.

The earliest scene in the movie, chronologically, depicts four-year-old Temple and her mother in a meeting with the doctor – most likely a psychiatrist. He diagnoses Temple as having autism. At that time autism diagnoses were scarce, and autistic children of Temple’s generation were very unlikely to be diagnosed as autistic. The clinician is thus arguably very well read and well trained, being familiar with such a “rare” new condition. Yet he still considers autism as interchangeable with childhood schizophrenia; this was an extremely common misconception at the time, and it remained common for decades more to come. Well trained as he may be, the doctor regards autism as hopeless and destructive. Temple will likely never speak, he says. It’s caused by a lack of bond between mother and child, he reproaches. And he recommends she should be institutionalized. The psychiatrist represents the common scientific perception of the time. He is an expert.

But Temple’s mother – a strong, educated, intelligent, and outspoken woman –rejects the doctor’s prognosis, and refuses to accept that her daughter will amount to nothing. She thus effectively opposes the psychiatrist’s expertise, and situates herself and her own understanding of her daughter’s condition – namely her own expertise as a mother – as equal, if not superior to that of the trained physician. Decades later, such opposition by parents will become widespread, as parents begin to collectively question the medical establishment’s approach to autism, its prognosis, and most importantly – its etiology. So that in contrast to what most experts claimed during the 1940s, 50s, 60s and 70s (and in some parts of the world still do), mothers knew they didn’t cause their children’s autism. It took a while for medical professionals to accept this as true – and nowadays, the fact that autism is innate is near consensus.

Another scene shows Temple’s team of school teachers frustrated by her behaviour. They consider expelling her. Only her science teacher realizes that her “bad” behaviour is not an integral part of her condition; but a result of a lack of support and care in the school environment. He takes it upon himself to mentor her, challenge her, and indeed love her. “Just a science teacher”, but nevertheless an expert in his own right, he has a huge positive effect on her life.

In college, a psychologist interviews Temple about her squeeze machine; utterly oblivious to the communication barrier between them, he asserts it has a sexual purpose, and forbids her to use it. Her mother, concerned of the impression that Temple’s use of her machine might create among her peers, follows suit. This time it is Temple’s aunt that insists that if the machine helps Temple, it must be allowed, and encourages her niece to devise an experiment to demonstrate that the machine is in fact helpful. The authority of the mental health specialist is thus undermined by a caring relative, who shows herself to be more of an expert then he is, at least in this regard. When Temple conducts her own study as to the possible benefits of her squeeze machine, a remarkable social process unfolds: she situates herself as an expert on autism not only by being autistic, but also by employing scientific methods to substantiate her assertions. The division between experiential knowledge and scientific fact is becoming blurred.

In the very last scene, we witness what is to become a revolution in autism expertise, as Temple’s own experiences, theories, ideas, and perceptions of autism and its meaning impress heavily on the conference participants, who very symbolically banish the “expert” speaker from stage as they ask her to take his place and speak in his stead. Autism self-advocacy is born.

It is important to remember that no type of expertise ever fully replaces another. Parents’ and educators’ expertise gained its rightful position alongside that of doctors and psychologists. Neurologists and geneticists (the more recent sciences) followed. Therapists and advocates, policy makers and social scientists, and not least autistic people all claim their right to make assertions, suggest theories, devise treatments, design priorities, and speak the ‘truth’. But truth is a problematic notion. One can never be sure that an objective ‘truth’ about autism can ever really be achieved. Instead, we are likely to witness an ever-lasting struggle between opposing or simply differently-focused discourses. A dynamic, ceaseless, complicated “matrix of expertise”, in the course of which the meaning of autism is never definitively unveiled, but is instead constantly negotiated.

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.

The Story of Luke

The Story of Luke (2012)

Like several others of the films previously discussed in this series (e.g. Snow Cake, Adam), The Story of Luke also begins with the death of the autistic protagonist’s main carer. This similarity between the movies is not surprising, because they actually share something quite fundamental between them; in all three films, autism is not engaged with in any serious way, but instead it is merely a plot device. Here’s how they work: the main carer of the autistic person is dead; someone else must now take care of him/her, and cope with the difficulties this entails; that someone will now learn valuable life lessons thanks to this experience, and come out fulfilled, happier, and morally better. Along the way, the autistic person him/herself will rather magically overcome hitherto insurmountable challenges due to an extraordinary newly-acquired will-power.

But what’s the problem, you may ask. Wouldn’t inheriting a responsibility to look after a person with a developmental disability indeed be a huge challenge, so as to inspire a story worth telling? Perhaps. But then it’s not only autism, is it? The same is true for any other newly found, and not necessarily sought after, responsibility for a fellow person; an elderly parent that suddenly needs care, a badly injured relative, or a baby born prematurely. So why bring up autism? Why this puzzling disability and not another, more straightforward one? I suspect the reason why the movie makers chose autism is mainly for its potential for creative dialogue, unique acting mannerisms, and humorous rhetoric. The specific and particular circumstances of living with autism, both positive and negative, are never treated seriously. Ok; The Story of Luke is meant to be a comedy, I get that. But I happen to think that when a movie maker takes it upon him or herself to engage with a neurological condition, they need to actually have something to say about it, rather than using it to make some loosely relevant point (at best) about human compassion and people’s capacity for betterment.

So unsurprisingly, there are many problems in how autism is depicted in The Story of Luke, but one thing really annoyed me: out of all the ambitions and desires that motivate people to go out, to do stuff, to struggle, and to ultimately overcome – couldn’t the makers of Luke think of something a little more sophisticated than his desire to screw? His sole reason for wanting a job – and this is repeated constantly throughout the film – is to get Maria on a date and look at her “pretty breasts” again. If Luke weren’t autistic, we’d think he was an immature chauvinistic moron, and root for his failure just out of spite. So instead of using autism as an excuse for such a questionable ambition, why not just give him a proper motivation to get a job; like, I don’t know, to contribute to society, to challenge himself, to earn the respect of his family and friends, or to, you know, pay the bills and buy groceries? We’re meant to believe Luke wants a job so desperately simply because he eventually wants to have sex with a lady with whom he spoke once. I doubt that such a haphazard motivation would drive anyone to make such huge, life-changing decisions and overcome massive difficulties as he did – pretty as Maria’s breasts may well be.

But there I go again, getting all worked up about representations, when this shouldn’t even be what this blog is about. So once again, let us shed our disbelief, and instead follow the path paved for us by the makers of this film and see how, despite it all, we can use The Story of Luke as an inspiration to discuss some important issues about autism in its social and cultural context.

My favourite scenes in the film were the ones in which Zack (Seth Green) – who’s presumably also on the autism spectrum – shares with Luke his knowledge of neurotypical behaviour. He takes his study very seriously – he observes neurotypicals carefully, takes notes, and makes inferences based on what he sees. In more than one occasion he refers to his approach as ‘scientific’. He makes use of all the tools at his disposal, including computer hardware and software, to devise experiments and practice interactions. When Luke is taken on board as Zach’s student, they treat Luke’s attempts at socializing with neurotypicals in the ‘outside world’ as field experiments. This is reminiscent of many autistic authors’ experience of constantly trying to ‘figure out’ other people. Seeing as people with autism often lack the capacity many of us apparently share of somehow automatically knowing what people mean, think or feel, they need to apply a rational method to interpret human behavior. A ‘scientific’ method, so to speak. Temple Grandin succinctly compared this feeling of constantly being on-guard and always having to think and analyze people’s behaviour and actions to being ‘an anthropologist on Mars’. I wrote in a previous post about the alien metaphor commonly used in autism discourse. Today let’s discuss the other half of that statement by Grandin – the ‘anthropologist’ theme.

In my post about Mozart and the Whale I discussed the common issue of autistic people feeling pressured to mimic neurotypical behaviour and ‘act normal’ (with an emphasis on ‘acting’). But the scenes with Zack and his binoculars made me realize something that I was somewhat oblivious to up until now, or at least that I’ve never fully appreciated; that in order to mimic neurotypical behaviour, you first need to have a pretty good idea of what actually constitutes ‘neurotypical behaviour’. And, well, that’s quite a tricky bit isn’t it?

I remember reading in many memoirs and blogs by people on the autism spectrum about how, as children in the school-ground, they were looking at the kids around them; how strangely they were behaving, how inexplicable their actions often seemed. Similes such as ‘it was like they were speaking a foreign language that I just couldn’t understand’ are quite common. Indeed, aside from the aforementioned (and not a favourite of mine, as you may have realized) alien metaphor, the culture concept, stretched to its broadest meaning, is perhaps the best tool around to try and understand the sort of difference that autism brings about. The experience might be something like being in a strange land, not knowing – or even recognizing – the local language, habits, customs, and rules. I can only imagine the confusion and frustration one must feel, and the resulting sense of exclusion and solitude – as well as fear.

Except – what if you were to take it upon yourself to study real hard, and come to speak the language, habits and so on? That would certainly make things much easier wouldn’t it? You could make friends, fit in, and become a member of the group. Even if you’ll never be a 100% like ‘them’, at least you won’t be a total stranger any more. Well, not really. This might be true when different cultures are concerned, but it does not seem to be the case with autism. Like I wrote elsewhere, a neurological difference is grounded not in language, history, faith, or even the body – it is inscribed in the brain; and as such, it cannot (nor should it) be made to go away. A person can change their clothes, religion, surname, and accent. If they will it, they can even change their skin color. But they can’t change their brains. They can’t change who they are. That difference is there for good.

So what’s my point? It is this: Zach confused things. His honest attempts to learn neurotypical behaviour in order to mimic it was misguided. Mimicking may get one so far in certain situation, but from what I gather, such attempts too often result in utter stress, frustration, and an anxiety of being “found out” (though sometimes, unfortunately, these attempt just can’t be avoided – the social pressure to conform is simply to overpowering. Sometimes things like getting an education or employment depend – sad as this may be – on one’s ability to ‘pass’ as normal. This is not inevitable, of course. This is why political action is necessary). But then what about learning neurotypical behaviour, not in order to mimic it or pretend to be it, but purely to satisfy one’s intellectual curiosity, and to make some sense of what too often seems nonsensical; that might be quite a positive enterprise, wouldn’t it? Understanding those different from oneself, I imagine, could go a long way in assuaging fears, feeling comfortable around those Others, and feeling more at ease in their otherwise intimidating presence. It offers the safety of knowing your surroundings.

It’s also just really interesting. I mean hey, it’s essentially what I chose to do with my life.

So here, I believe, is something anthropology can really contribute to bettering the lives of autistic people – as it can be employed not just to the study of autism by neurotypicals (which is what I’m doing), but also to the autistic study of neurotypicals.

It’s long been held in my discipline that in order to be a good anthropologist, you need to leave your familiar surroundings. That’s the best – and some say the only – way to ‘stumble on every rock’, as it were; to be intrigued by what others consider mundane; to be bewildered by the otherwise banal; to ask questions that no one had thought of asking; to offer new sorts of explanations to phenomena mistakenly thought to be sufficiently-understood. When Zach observes the ‘mating habits’ of the office NTs, his potential for coming up with novel ideas about human behaviour is in fact much greater than if a neurotypical anthropologist would observe the same activities. For example, the fact he attributed such importance to the frequency and duration of eye contact obviously derives from the fact that to him (presumably), any eye-contact is an inexplicable activity. This puts him in the best of positions to try and explain this ‘odd’ behaviour – because it allows him to ask the most unobvious questions about what makes it so.

But importantly, while Zach’s curiosity is potentially very productive, his methods are entirely wrong. Observation might lead you to ask interesting questions; but it alone will never allow you to come up with any valid answers. In referring to office flirtation as a ‘mating ritual’ Zack makes a mistake that is common among non-anthropologists (or early anthropologists, or just bad ones) – the assumption that human behaviour is as predictable and patterned as animal behaviour. It isn’t. Human behaviour, much like humans themselves, is as unpredictable as it is complex. Affect, agency, performance, subversion, selfhood, defiance, creativity, cultivation – these are just a fraction of the concepts social scientists use when analyzing social behaviour in humans, in order to emphasize just how irregular it is, and how different ‘social forces’ are (if those can even be said to exist) from the laws of physics, chemistry, or biology.

If Zach wanted to understand the ‘ritual’ he was observing (namely flirtation near the water cooler) – he would have no choice but to come out of his office and ask the people involved what they thought was happening. Why did she laugh when he told that obviously unfunny joke; why did he look away when she looked at her watch; that sort of thing. He needn’t take their answers at face-value though – he’s absolutely entitled to make his own interpretation. That’s what anthropology is mostly about. But collecting their own thoughts and ideas is an invaluable first step. Without it, one never really has a chance of understanding other people. Without it it’s just guess-work, and you’re very unlikely to guess correctly.

“The institute for the Study of the Neurologically Typical” is a brilliantly articulated and witty example of what autistic anthropology shouldn’t be (it’s satirical, of course, and I’m just using it as a straw-man). It paints a grotesque image of neurotypical behaviour, that’s as invalid as it is funny. As a piece of social commentary, a satire – it’s brilliant. But this is not the kind of thing I’m proposing.

I wish we were all anthropologists – I honestly do. I think anthropological insight holds incredible potential for a better, more just society. But anthropology shouldn’t be taken too lightly, either, lest people are taken lightly; and that’s the very thing anthropology tries to avoid. In other words, be anthropologists, I urge you; it might just make things easier; behaivours might become less confusing, people might be seen as less strange, and the world a bit less chaotic. But be good anthropologists; take a course or several, read some anthropology introduction books, follow some anthropology blogs – do it right. Bad anthropology is often ridiculously bad, and is damaging more than it is helpful. Good anthropology, on the other hand, can be incredibly useful.

Is this what I was getting at this whole time? I sincerely doubt it. But I do like what came out. So I might just keep it.

What do you think about all this? I would love to hear your thoughts.

	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