Asking the Right Questions: Reflections on Autism and Anthropology

(Over the next couple of months, I will be hosting a series of guest posts on the social study of autism. I’m proud to begin the series with this great post from Elena Sobrino. Elena is a student in her senior year at the University of Michigan-Flint, where she will soon be graduating with degrees in Music and Anthropology. Currently, her main research interest is in medical anthropology, and she plans to continue looking at autism and social theory in graduate school)

For an anthropologist, autism is a terrain of research that’s as overwhelming as it is exciting; it’s clear that undertaking a study of autism is relevant to a whole host of themes, including identity, self, personhood, disability, difference…the list goes on and on! If we accept the model of autism as a spectrum, there is potentially no area of human experience that takes place completely outside this spectrum. The difficulty here is choosing which line of inquiry to pursue! The directions research could take are endless, but it’s quite possible that the answers we imagine lying in wait for us are not necessarily more important than the questions we can start asking about autism in the meantime—and the way we ask them.

In my own journey into autism research, I find myself less concerned with moving towards a predefined goal or discovery, and more interested in excavating the unacknowledged ways autism impacts culturally shaped conduct and relationships. While all this sounds rather vague and broad in scope, this perspective encompasses a range of more specific questions, which I’ll discuss shortly. In maintaining that conclusions shouldn’t be fixed from the outset, I don’t mean to imply that research should be purposeless or devoid of any direction whatsoever. Rather, by emphasizing process over outcomes, I am in a way critiquing the notion that “advances” in research flow in simple, linear progressions of false to true within any form of knowledge production. Anthropologically speaking, it often makes more sense to consider multiple points of view simultaneously, allowing a wide margin for the flexibility and unpredictability of human behavior!

To craft an anthropology of autism that is meaningful and worthwhile, I would argue, depends on a thoughtful integration of theory and practice. Achieving this requires us to consciously put a tentative question mark next to the assumptions that are often overlooked in everyday experience or even in other academic disciplines. At a basic (though important) level, the first step in overturning the assumption that autism = pathology is to acknowledge the ways in which disability is constructed as an interaction of the biological and cultural. In this sense, disablement can be located in the social, not just within the individual. I also find it helpful to view the binary separation between order and disorder, as it relates to so-called autism spectrum disorders, as a dialectical rather than oppositional relationship. In other words, autism involves the coexistence of both challenges and competencies, not an either/or situation.

It’s sometimes tempting, on the one hand, to construct autistic individuals as helpless objects of pity, or at the other extreme, to romanticize them as mystics or savants. Neither approach, in my view, contributes to a useful understanding of autistic ways of being. Instead, invoking such extremes only propagates the constitutive othering of autistic individuals, putting more distance between them and us “neurotypicals.” Indeed, it seems to me sometimes that reducing autism to simply a neurological difference involves playing into a tendency to see the brain as synecdoche for the person as a whole—a powerful notion, no doubt, but one that could be challenged! My intent here is not to question the “realness” of autism, or to claim that brain differences do not exist or have no real effects, but rather to suggest that some autistic traits that are considered problematic (like stimming, or avoiding eye contact) may not originate from an inherent, cognitive inability to relate, but rather from the imposition of socially constructed norms upon the conditions of these relations.

Theorizing autism is ultimately, however, an incomplete project without recognizing the significance of autism as a lived experience. The conceptual existence of autism, as a biomedical category, as a diagnosis, as a product of interdisciplinary research, is of course much easier to grasp than the spectrum of autism we find beyond the ivory towers and clinical handbooks. The concept of autism has a traceable history, has boundaries we can perceive and describe across disciplines with shared terminologies we alternately accept or problematize. Yet the way bodies inhabit autism is a much more complicated story to tell—yet surely, it is the person, after all, not the concept, that should be at the center of our intellectual pursuits as anthropologists!

One obvious way we could maintain a person-centered approach is to make space for autistic people to voice their experiences themselves. As anthropologists, we have the tools to argue that this space is both possible and valuable. Part of doing this could involve pointing out ways we could collectively expand our definitions and standards of communication. For example, art, music, and literature are all areas where there is powerful potential for profound expression. In fact, it is precisely in the most idiosyncratic forms of expression, whatever they may be, that we see a glimpse of a reality that eludes the data of biomedicine, that perhaps articulates far more than even our own carefully constructed words we put together as anthropologists.
My own attempt at reconciling theory with real life lies in locating autism across different domains of human experience—specifically, kinship, religion, and biomedicine. As a sibling of an autistic individual, I’m especially aware of the ways in which autism can transform family relationships in a way that subtly restructures assumptions about (in)dividuality. Within the context of my own family, the everyday routines we perform to accommodate my brother’s autism have become so habitual as to be mundane, but they are nevertheless essential to sustaining our family life as an environment that enables rather than disables. Without implying that my own (limited) experiences can speak for the experiences of others, I nevertheless think it would be intriguing to speculate on how strong relationships with autistic individuals (whether kin-based or not, really) compel an increasingly dividual perception of personhood. In addition, it is important to point out that in general, crucial issues such as the negotiation of care and dependence are very often not simply abstract questions but very concrete, pressing realities for families of autistic children or adults; for families, these issues have political and economic contours, and their resolution is dependent on access to medical, legal, educational, and other resources.

As for the religious dimension, I am particularly interested in how Catholic, charismatic spirituality construes wholeness and healing in comparison to the clinical narratives of biomedicine. From this particular faith-based perspective, physical and spiritual health are intertwined, with the implication resulting that autism is not only a neutral difference, but a condition with ambiguous moral valence as well. I say ambiguous, because paradoxically this kind of spirituality employs a cure-oriented, corrective approach based on prayer, but simultaneously endows those with autism and other disabilities with a distinctly sacred quality of purity and innocence. In a somewhat similar vein, I’m also currently working on a comparison of Traditional Chinese Medicine and biomedicine and their respective approaches to autism for a class project. Unlike biomedicine, TCM does not operate through a mind/body dichotomy, and health is conceived of as a balancing of energy, in contrast to the notion of a standardized, normal body that is the point of reference for health in biomedical terms.

To sum up my thoughts, I feel that ultimately any project that seeks to critically reflect on autism must have, at its heart, the kinds of questions that destabilize even the firmest claims society and biomedicine make about autism. Such questions are not easy to formulate, and are even less easy to answer with the reliability and certainty discourses of scientific knowledge carry. Perhaps, in the end, the only answer our questions need is the possibility of social change: for respect, awareness, and justice to replace precarity and stigma. To my mind, the ultimate achievement for an anthropologist would be to finally stumble into asking the right questions, after years, perhaps, of dogged pursuit—and maybe, if we’re very very very lucky, someone will actually read the thousands of words we spent asking them! 😉

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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.

How many participants have you got?

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

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

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

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

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

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

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

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

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

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

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

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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.

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