Aut-ethnography: working from the ‘inside-out’.

(In this fifth post in our series of guest posts on the social study of autism, it’s absolutely a thrill to have Damian E M Milton. Currently studying for a doctorate with the Autism Centre for Educational Research at the University of Birmingham, Damian is also a member of the programme board for the Autism Education Trust, and a member of the scientific and advisory committee for Research Autism. Damian has also recently started work for the National Autistic Society as Head of Autism Knowledge and Expertise (Adults and Community) and is also employed as a Research Assistant at London South Bank University. Damian holds a number of academic qualifications in a range of subjects: Sociology, Philosophy, Psychology, Education, and has a number of years of experience as a lecturer in both FE and HE. Damian’s interest in autism began when his son was diagnosed in 2005 as autistic at the age of two. Damian was also diagnosed with Asperger’s in 2009 at the age of thirty-six.)

“And you may ask yourself, well – how did I get here?” (Talking Heads – ‘Once in a Lifetime’).

Many readers of this blog will be aware of how some sociological and anthropological scholars have been turning their gaze toward autistic ways of being in the world. What readers may be less aware of is that there are also a number of autistic scholars who have been working in such fields for many years, often on the margins of academia (Arnold, 2012; Milton, 2014a). One can see expressions of how autistic people have sought to inform knowledge production in the field through their lived experience since the inception of autistic self-advocacy (e.g. Sinclair, 1993), to more recent academic commentary pieces on the potential epistemological value of autistic people being fully involved throughout the research process (Milton and Bracher, 2013; Milton, 2014b).

In this article, I will be sketching a path through some of my own work in the field and how this work links in with wider efforts within the autistic community. Instead of starting at the ‘beginning’ in the sense of usual, coherent linear narrative, I will ‘begin’ in the recent past and work backwards / sideways / ‘any-old-which-ways’ – p.s. this is not an ‘overview’.

In a recent article (Milton, 2014c) aimed primarily for an audience of psychiatrists and medical practitioners working with autistic clients, I gave an account of my own experiences with the psychiatric profession and the fragmented sense of self-identity that I have experienced. In doing so, I gave what I referred to as an ‘aut-ethnography’. Unlike auto-ethnography which often seeks to construct a coherent narrative of self over time, to me an aut-ethnography (at least my experience/version) is a fragmented one, where snippets of information are formed into ‘rhizomatic’ patterns of shifting meanings. Interestingly to me, Melanie Yergeau, an American autistic scholar and activist, referred to an essay she had written as an ‘autie-ethnographic narrative’ (Yergeau, 2013).

For me, much autistic scholarship (albeit those who have become involved in ‘hard science’ disciplines) has unsurprisingly argued for, and highlighted the value of, subjective lived experience in learning about what it is to be autistic (Williams, 1996; Lawson, 2010). Many autistic activists refer to the social model (or indeed post-social models) of disability and critique purely deficit model definitions of what autism ‘is’, whilst not wishing to detract from the huge challenges that autistic people in, all our diversity, experience in navigating social life. This ‘standpoint epistemology’ and arguments over the value of such knowledge can be seen as reminiscent of previous debates in social science regarding insider/outsider interpretations, Orientalism, situated knowledge, and so on. Autism does not just represent a form of cultural understanding however (although yes – autistic communities and culture do ‘exist’ for anyone still not sure), but also refers to differing neurological embodiments and dispositional affordances that shape one’s interactions with social life (Milton, 2014a) – one of the consequences of which being the ‘double empathy problem’ (Milton, 2012, 2014b, Chown, 2014).

My own theorising regarding the ‘double empathy problem’ came about owing to the disjuncture I felt with the dominance of ‘theory of mind’ or ‘mentalising’ theory within the field. Such theorising leads to the framing of the social interaction difficulties autistic people face as primarily located within the brain/mind of the autistic person, rather than in a breakdown in reciprocity and communication between two differently disposed ‘social actors’ (Milton, 2012). According to ‘double empathy’ theory, it is a problem experienced by both parties, otherwise why would autistic ways of being be such an ‘enigma’ to non-autistic ‘experts’ in the field. This breakdown in understanding has been remarked upon in some form or another by many autistic writers (e.g. Yergeau, 2013) with the theory of the ‘double empathy problem’ attempting to situate such an understanding within sociological and social psychology theory, leaning heavily on the work of Goffman and Garfinkel amongst others.

Since this initial formulation, the theory has been expanded by other autistic scholars (Chown, 2014), and in my own work, on the acquiring of ‘interactional expertise’ influenced by the work of Harry Collins and Rob Evans (Milton, 2014b). The ‘seed’ of how I came to these ideas came from working on philosophical ideas of disposition and difference that I had been developing all my academic life, including the years before I came into contact with the concept/construction of ‘autism’ (Milton, 2014a). As autistic people, whether academically oriented or not, one often becomes acutely aware that one is not one of the ‘in crowd’ but a cultural ‘outsider’. After time, some realise that their perceptions are markedly different to other peoples, but with effort one can learn systematically to at least build a level of ‘interactional expertise’ and, this goes for non-autistic people attempting to interact with autistic people too! On a pragmatic level, this means that one may not be able to ‘walk the walk’, but one may be able to gain a level of understanding of autistic ‘talk’ (whether verbally articulated or not).

In order to build interactive expertise in both directions, and to build bridges across the ‘double empathy’ divide, means the discovery of ways to work together, consequently this would mean building inclusive communities of practice where autistic expertise (Milton, 2014b) is neither devalued nor tokenised (Milton and Bracher, 2013). To build trusting and practically workable partnerships however, means establishing equal status between those working on such projects and for autistic people to no longer be stuck behind the ‘glass sub-heading’ (Milton and Bracher, 2013), and ‘fishbowled’ (Moon, cited in Milton and Moon, 2012) for the benefit of non-autistic researchers.

References

Arnold, L. (2012) Autism: its relationship to science and to people with the condition. Autonomy: the Critical Journal of Interdisciplinary Autism Studies. Vol. 1(1): http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/AR2/html

Chown, N. (2014) More on the ontological status of autism and double empathy. Disability and Society. Vol. 29(10): 1672-1676.

Lawson, W. (2010) The Passionate Mind: how people with autism learn. London: Jessica Kingsley.

Milton, D. (2012) On the Ontological Status of Autism: the ‘Double Empathy Problem’. Disability and Society. Vol. 27(6): 883-887.

Milton (2014a) Embodied sociality and the conditioned relativism of dispositional diversity. Autonomy: the Critical Journal of Interdisciplinary Autism Studies. Vol. 1(3): http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/AR10/html

Milton, D. (2014b) Autistic expertise: A critical reflection on the production of knowledge in autism studies. Autism DOI:10.1177/1362361314525281

Milton, D. (2014c) Becoming autistic: an aut-ethnography. Cutting Edge Psychiatry in Practice. Issue 4: Autism Spectrum Disorder: 185-192.

Milton, D. and Bracher, M. (2013) Autistics speak but are they heard? Medical Sociology Online. Vol. 7(2): 61-69.

Milton, D. and Moon, L. (2012) “And that Damian is what I call life changing”: findings from an action research project involving autistic adults in an online sociology study group. Good Autism Practice. Vol. 13(2): 32-39.

Sinclair, J. (1993) “Don’t Mourn For Us”, http://www.autreat.com/dont_mourn.html, – accessed 17/01/15.

Williams, D. (1996) Autism: An Inside-Out Approach. London: Jessica Kingsley.

Yergeau, M. (2013) Clinically significant disturbance: on theorists who theorize theory of mind. Disability Studies Quarterly. Vol. 33(4): http://dsq-sds.org/article/view/3876/3405

Related posts:

Questioning prescriptive power: A re-thinking of theory of mind

(Over the next couple of months, I will be hosting a series of guest posts on the social study of autism. In this second post of the series, it’s great to have Matt Willis. Matt has recently completed an honour’s degree in social anthropology at La Trobe University in Australia. His research, which was based on a careful reading of prior research and literature, focused on autism and the anthropological perspective.)

I’m going to be writing about the unbalanced construction of autism, drawing primarily on theory of mind as an example. My aim is to get people thinking about how cognitive theories, such as theory of mind, are constructed and applied by neurotypical people to autistic people, or those labelled as autistic. How does this affect the validity of the theories? Who has the power in the decisions to use and how to apply these theories?

Before I dive into that though, I want to establish a precedent to my point: intelligence tests. Anthropologists and psychologists, among others, are generally critical of the practise of applying intelligence tests developed in one culture to people in another. Psychologist Patricia Greenfield considered ability tests “cultural genres” in that their construction is determined by particular cultural symbols and normalised practices. Taking one cultural genre and trying to superimpose it on a different culture is like trying to fit a square block into a circular hole—it’s not going to work! Robert Sternberg outlines a bunch of great reasons as to why this is the case, including different cultural evaluations of what ‘smart’ means, the familiarity of assessment materials and delivery, children might develop skills that serve them better in their environments than other environments, and people from different cultures might simply think about things quite differently (see reference list at the end of the post if you’re interested in reading more).

Now, these tests don’t necessarily have much traction within the cultural genres in which they are constructed either (if you even accept the notion of “cultural genres”), but that’s another can of worms. The question is: what does any of this have to do with autism (aside from the fact that autistic people likely frequently have to take such tests and are then erroneously labelled as this or that)? Consider once more the idea of constructing an aptitude test based on a particular cultural genre and attempting to use this test to explain the abilities of a group of people from a different cultural genre. Who is constructing this test? Why have they done so? Why are they applying it in the context of a different cultural genre? In other words, where is the power and how is it being used?

Theory of mind (the theory that typical minds have an ability to perceive states of mind in other people, such as intentions, knowledge, and desires) is frequently said to be impaired in autistic people. But why? Consider this: neurotypical children commonly fail theory of mind tests. In most of these instances, attempts are made to find alternative explanations and discover other instances in which the kind of empathy associated with theory of mind is present. Yet people who are labelled as, or in the process of being labelled as, autistic generally don’t receive the same scrutiny. It’s more a case of ‘Alright, there you, there’s the evidence!’

Damien Milton, an autistic person himself, as well as a doctoral social researcher at Birmingham University, has written a great critique of theory of mind, entitled On the Ontological Status of Autism: the ‘Double Empathy Problem’. In this article, Milton points out that many autistic people are made to feel uncomfortable or threatened during theory of mind tests because of the way the test is administered. This highlights, fairly strongly, the fact that tests like theory of mind are designed and implemented by neurotypical people, based on what they believe is appropriate methodology. Now, I’m certainly not trying to suggest that autism is equivalent to a culture, although different movements surrounding autism may constitute cultures. Even so, I think theory of mind is potentially another kind of invasive aptitude test, constructed by one group of actors and imposed upon a separate group of actors.

This is not to say that a degree of absence in theory of mind might not be observed in an autistic person. I have an autistic friend who has readily admitted that it is somewhat the case for him. But that “somewhat” is important. Ben has already written about the diversity of autism. We all know that autism is not homogenous, that autistic people are as different from one another as are neurotypical people from each other. You cannot apply one, totalising theory to a diverse group of people. Nor can you ignore the fact that absences of theory of mind may very well manifest to some degree in many neurotypical people.

In Milton’s article, his main point is that the neurotypical researchers who investigate the presence of theory of mind have a distinct position of power in deciding whether their fellow communicator is perceiving states of mind, or empathy. Indeed, neurotypical people in general hold this power. The kind of empathy under question is determined by neurotypical people, based on what they believe is normal behaviour. Under this model, a neurotypical person’s empathy is difficult for an autistic individual to grasp. Yet, as Milton argues, it is equally true that an autistic person’s empathy is difficult for a neurotypical person to grasp. Communication works both ways, and the rules of communication should not be determined by only one actor’s ideas of what is normal and what is not.

So what can we say about theory of mind after all this? That it is constructed by neurotypical people, assumes that neurotypical cognizance (if there is such a thing at all) is free from an absence of theory of mind, assumes that autistic people universally display a degree of an absence of theory of mind, yet does not seem to engage in communication with autistic people on level ground. Therefore, the foundation upon which the notion that autistic people have a deficit in theory of mind is built, is not as solid as many people assume.

What this all means for me is this: people need to stop generalising cognitive normalcy and start considering that many people communicate, think, and feel in different ‘non-typical’ ways. These ways are not invalid and are not representative of entire categorisations of people. Put another way: neurodiversity deserves all the momentum it can get.

Publications cited

Milton, Damien 2012, ‘On the ontological status of autism: the “double empathy problem”’, Disability & Society, vol. 27, no. 6, pp. 883-887.

Greendfield, Patricia 1997 ‘You can’t take it with you: why ability assessments don’t cross cultures’, American Psychologist, vol. 52, no. 10, pp. 1115-1124, < http://www.ecdgroup.com/download/sa1yctii.pdf>

Sternberg, Robert J. 2008, ‘Culture, instruction, and assessment’, in J Elliot and E Grigorenko (eds.), Western Psychological and Educational Theory in Diverse Contexts, Routledge, Oxon, pp. 5-22.

Related Posts:

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! 😉

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?

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.

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.

Adam (2009)

Adam (2009)

I first wrote this post immediately after watching Adam for the first time – I wrote very fondly of the film, as I honestly enjoyed it at the time. I still think it’s a pretty good movie, but after reading this review by the awesome Caroline Narby at bitch magazine, I see now that I was actually overlooking some crucial points. This revised post is an attempt to reconcile my formerly held opinion of the movie with my new one.

(Which makes me wonder, which of my opinions of the film is more authentically ‘mine’? The one I formulated myself right after watching it, or the revised one, reformulated after reading someone else’s thoughts and reflections? I guess the short answer is: the latter.)

Let’s start with the alien metaphor; it seems like you can’t read / watch anything about autism without coming across some mentioning of a life form from another planet. Why don’t we talk about that for a while?

In the very beginning of the film, during the opening captions, Beth has this to say:

“My favorite children’s book is about a little prince who came to earth from a distant asteroid. He meets a pilot whose plane has crashed in a desert. The little prince teaches the pilot many things but mainly about love. My father always told me I was like the little prince. But after I met Adam, I realized I was the pilot all along…”

So of course this is a reference to Antoine de Saint-Exupéry’s The Little Prince, originally published in French in 1943. If for some reason you haven’t read it yet, stop everything you’re doing and go read it now. Seriously, I’ll wait.

Are you done? Ok.

So what’s the deal? Why is the association of autism and alienism so common?

Ian Hacking, possibly one of the more prominent philosophers alive today, has written an article about exactly that. It’s called Humans, Aliens & Autism. Nothing too fancy or sophisticated, but a thoughtful explanation nonetheless. I’ll give you his argument in a nutshell.

“Aliens in modern space adventures may talk and walk like us, but by definition they are not human … Aliens can be better than us, as in moral fables such as ET. Most of the time they seem to be bent on destroying us … However, we seem to hold up aliens as mirrors to teach what is best or worst in us or in the human condition” (2009:45-6)

Hacking makes a great point here. When you think of it, aliens are always a metaphor; a metaphor for something that’s not us, but that’s not entirely different either. Some form of alter ego for the whole of humanity. An invention that’s meant to tell ourselves something about who ‘we’, as a species, are.

Ok, so what does this have to do with autism?

Well, Hacking believes this has something to do with the difficulty many with autism have with making eye-contact. This is because people – and this has been thought true for millennia – feel they can know the person in front of them just by looking at their eyes. You know how they say that “the eyes are the mirror to the soul”? Well, that sort of thing. Looking someone in the eyes allows us (well, some of us) to know the person in front of us, or at the very least feel like we know them (this distinction is crucial). Hacking calls this perceived ability ‘Köhler’s phenomenon’. If we are denied access to this proverbial “mirror to the soul” for whatever reason (either because the person in front of us isn’t making eye-contact, or we aren’t) we are confused, uncomfortable, frustrated, and mostly – we lack the words to describe our experience. It’s too unique. Hence, the need for a powerful metaphor.

Hacking argues that “…that kind of immediate understanding that Köhler described is not the common property and practice of that part of humankind that is autistic”, and he concludes: “We asked, “why does the metaphor of the alien crop up so often in fact and fiction?” We can now state an answer: because of the absence of Köhler’s phenomena in relations between neurotypicals and autistic people.” (2009:52) So the reason aliens come up so often in talk about autism is because autistics and neurotypicals do not share a certain ‘bedrock’ of experience that allows each-others’ inner being to be projected outwardly, and seen directly by the observer. This creates a feeling of unusual strangeness, which is well reflected by use of the alien metaphor.

Arghhh, I dunno. I mean ok, Hacking’s explanation is relatively straightforward and logical (if a bit obvious), and I don’t feel a burning need to confront it. But I’m not very satisfied with it, either. Because what Hacking might be overlooking is the sort of power dynamic that is reinforced whenever the alien metaphor is used. Difference is very rarely neutral. Seeing as the alien metaphor invokes a very profound feeling of difference, we need to ask what is the political implications of referring to an entire group of people as ‘aliens’ (and I suppose this is where the tastefulness of the alien metaphor in Adam is brought into question). It’s not necessarily anything as simplistic as ‘we are good, they are bad’; we already saw that like in E.T. – or The Little Prince, for that matter – the alien is often morally superior to the earthlings. I would think the risk of using the alien metaphor is in that it reproduces a state of events in which one group (neurotypicals, in this case) is more privileged to determine the extent of the difference between it and the other group. The voice is always the earthling’s voice. Hence the voice of the autistic person, and his/her way of defining themselves or categorizing themselves is not taken into consideration. In Adam, the alien metaphor shapes the viewer’s experience of the story in the following way: despite Adam’s name being in the title, it makes it a story about Beth. Because if Adam is the alien, then we are quite forcefully made to view the story through Beth’s perspective of him. As Caroline Narby rightfully points out, Adam becomes passive; merely a plot vehicle, whose “ultimate purpose is the moral instruction and betterment of the non-disabled Beth and, by extension, of the audience.” Spot on.

In its use of the alien metaphor, Adam is a striking example of Othering. It is not a bad-intentioned endeavour at discussing autism, but a misguided one nonetheless. Difference is fine – we need differences, we thrive on differences. Sameness should not be an ideal, and differences should not be concealed. But one has to be sensitive to power dynamics when discussing differences. To refer to another as so strange that he may well have come from a different planet is, well, plain wrong. Not just for its implications (the false assumption that autistics can never be sufficiently understood by us NTs – so what’s the use of even trying?), but for the very reasoning that brought it on: Autism means difference, but not THAT much of a difference. We don’t need to look up to the stars to account for this difference – the people on Planet Earth are sufficiently diverse. And we are all equally human.

And then a harder question creeps up: what to make of all those instances when autistic people refer to themselves as aliens. Wrong Planet being the most prominent example. I’m going to leave this question open for now. But I would love to hear what you all have to say about this!

I actually devoted way too much text to what is a very small part of the film – I’m aware of that. But I thought it makes an interesting point of discussion nonetheless. I want to briefly make one more point, though: I did think Adam was probably the most socially and politically aware movie about autism from all those I have watched so far.

About half way through the plot, Adam undergoes a series of unfortunate events. First, he unexpectedly loses his job; not because he did bad work, but for failing to adhere to his boss’s instructions (instead of a plain talking doll, Adam makes one with artificial intelligence; brilliant idea, but not too practical, from a commercial point of view). Then, cardboard box in hand (apparently the universal ‘I just lost my job’ signifier, in American cinema at least), he goes to watch kids in the school where Beth works. He just needed a splash of childhood innocence, to cheer him up a bit. Failing to see why an adult man watching children might worry some people, he is stopped by the police, and this quickly escalates into a violent and degrading affair. Then unemployment, and depression, and anxiety, and self- injurious behaviour.

This sequence was so political that I had to reassure myself that I wasn’t reading too much into this – this is an American movie after all. But no, it’s all there. And I have to give the creators credit; it’s very well done. See, I come across a lot of literature on autism in sociology, social work, public health, education, law etc. So much of this really good research is concerned with the type of difficulties autistic people face that are unequivocally social, similar to those depicted in Adam. Being thrown out of school / university; being shamed in public; losing jobs and failing to find employment; being arrested and incarcerated; even winding up living on the street – these are all relatively common experiences for people with autism; at the very least more common than for the general population. Of course, just because someone is autistic does not automatically make him/her unaccountable for their actions; But there is obviously room to take a person’s atypical neurology (and life history as autistic) into account when sanctioning him with expulsion / dismissal / arrest / incarceration. And this is seldom done. That’s a political problem for autistic people; and it is a problem that the makers of Adam rather courageously took it upon themselves to engage with.

So yes, sure, you would expect Adam to realize that complying with his boss’s directions is important if he wants to keep his job. You might expect him to realize that there’s a perfectly good reason for police to want to look at his ID when he’s staring at children through the school fence; and there’s definitely an unnecessary implication of violent tendencies in his banging his head against the mirror. In many subtle ways, Adam’s depiction of autism is inaccurate, stereotypical, or simplistic. But as far as creating some awareness to the sort of problems autistic people have to deal with in this world (those that go beyond social awkwardness or inability to pick up social cues), I thought the makers of Adam did a very decent job.

So good on them.

And while we’re at it, I thought it was really fair that Adam tells Beth about his having Asperger’s himself, rather than some doctor / psychologist sharing this information; I also thought it was very cool that in order to learn about Asperger’s and to form an opinion on whether Adam is good relationship material or not (a reasonable concern), Beth reads an autobiography written by an Aspie (it was Pretending to be Normal by Holliday Willey – haven’t read this one yet); I loved the fact that the term neurotypical is used in the movie, and even as a sort of caveat to psychologists’ expertise (most of them being neurotypical, and therefore have limited knowledge about autism); and I even thought it was a brave choice to write the following lines for Beth during her fight with Adam (after he freaks out about her lying to him, and wishes her dad to go to prison for life): “You’re a child Adam. Fuck Asperger’s. You’re a fucking child”. Was that over the line? Probably. But I appreciated the implication: just because Adam is an Aspie, this does not excuse him for acting like an asshole. And that’s super fair, isn’t it? In some roundabout way, I felt this was a fairer treatment of autism than in most movies.

What do you think? I want to know.

My Name is Khan

My Name is Khan

Rizvan Khan grows up in a Mumbai neighborhood – possibly a slum. He is different from the other children; he takes things way too literally; loud noises and big crowds make him anxious; he dislikes being hugged, and gets upset by the color yellow (is a disliking of one specific color in any way common among autistics? I personally have never heard of this). He’s bullied at school, but his genius for mechanics earns him a respectable role in his community. His mannerisms are typical – perhaps stereotypical – of an autistic boy. But there is no real surprise there, or any room to wonder; we were already told by the movie’s opening captions that “The protagonist in the film suffers from Asperger’s syndrome, a form of autism.” And are further informed that “While the film endeavours to depict the character as authentically and sensitively as possible, it is a work of fiction and hence certain creative liberties have been taken in the portrayal of the condition.”

What an interesting statement. Why was it put there? Is it meant to appease those who might be offended by the inaccurate representation of autism in the film? Is it meant to forewarn the viewer no to take its portrayal of autism at face-value, lest he/she regards this as a project meant to educate, rather than entertain? Were the lessons from ‘Rain Man’ learnt – with its huge but unjustified effect on the understanding of autism in the English speaking world? Whatever the reason, I appreciated the film makers’ effort to qualify their depiction of autism as not-necessarily-accurate; after all, no depiction of autism in film can ever be 100% accurate (nor, for that matter, any depiction of anything else), so best to be aware of that fact, rather than to recklessly assume the role of educator.

As Rizvan reaches adulthood and moves to the US, he is diagnosed with Asperger’s syndrome by his sister-in-law, Hassina. “She was from Brooklyn, New York City”, he tells us. “She taught psychology in the university here. She was the first to find out that I had Asperger’s syndrome. My fear of new places, new people. My hatred for the colour yellow and sharp sounds. The reason for me being so different from everyone was defined in just two words: Asperger’s syndrome.” Quite beautifully put, don’t you think?

Rizvan falls in love with a woman, who he then marries. Later, following a terrible tragedy, he goes on the road, getting involved in all sorts of Forrest-Gump-like adventures, till the eventual and predictable happy ending, when he (spoiler alert) meets the president of the United States. Realism was never intended by the film’s makers. Over-acting and an inclination to melodramatic over-the-top-ness are hallmarks of Indian cinema, and My Name is Khan is no exception. But having said that, I did really enjoy the movie. I sympathized with and rooted for Rizvan, and I completely ‘got’ his love for the beautiful Mandira. I cried my eyes out in the sad bits, jollily danced my head during the Indian musical montages, and laughed at the good natured Bollywood allusions. All in all, I thought My Name is Khan was very good. And it raised some extremely interesting issues.

My Name is Khan is very clearly a story about difference. But the type of difference that is discussed is not so straightforwardly laid out. Initially, we are led to believe that the film deals with a neurological difference; an autistic boy growing up in a neurotypical environment (as is usually the case); treated with cruelty by his peers, but loved and understood by his mother: “No doctor could ever tell her why I was the way I was” he narrates; “But Amni… she never felt the need to know why. I don’t know how, but she found a way to know me”.

But then the plot unexpectedly turns to focus on a quite different sort of difference; riots break out in Mumbai between Muslims and Hindus. Ethnic and religious rivalry becomes the focus of the story.

As a boy, Rizvan, a Muslim, repeats to his mother some random violent rant against Hindus that he over-heard in the street. Amni, outraged, explains to him in a way she knows he will understand: Muslims and Hindus are exactly the same. People are only different insofar as they are either good or bad; that is the only difference that exists.

But if that’s the case, what can be said about Rizvan’s own way of being different? It seems to be implied that it is as insignificant as ethnic or religious differences. But is that really true?

The immediate implication of this message is obviously positive; it is that differences don’t matter, we are all the same; we are all equal. We should thus accept one another, love one another, and judge each other based on actions – namely what one does; rather than on properties – namely what one is (anyone finds this reminiscent of yet another Forrest Gump motif? “My mama always said”, Gump kept repeating, “stupid is stupid does”). This is a peaceful message of tolerance. But there is another side to this. In asserting that people are all the same, and by implicitly comparing ethnic differences with neurological differences, Amni ignores an important fact – that Rizvan’s way of being different is, well, different. It is not grounded in beliefs, traditions, texts, language, ancestry, or places of worship. It is not even grounded in the body, as is sometimes the case (from henna dyed hair through circumcision to skin color). Instead, the difference between Rizvan and his peers is grounded in their respective brains; in their minds; in – some would say – the very thing that makes them human to begin with.

In other words, we could regard ethnic or religious differences – as well as nationality or gender – as mere add-ons, under which we are all essentially the same. But when neurological differences are thought of in the same way, this poses some difficulties. Autism involves a different wiring of the brain, a different mechanism of cognitive process; so if autism is also such an add-on, what is underneath it? Is there an underneath? Because if there isn’t (it’s just turtles all the way down…), can autistic people really be said to be the same as neurotypicals? What would be the nature of this sameness?

The view that autistic people and neurotypical people are essentially the same is obviously good-intentioned, but it’s inaccurate. Primarily, it relies on the assumption that in order to achieve equality and acceptance, we first need to establish sameness. That’s not necessarily so. Equality and acceptance can be similarly achieved by simply acknowledging the fact that people are different; that this difference is not necessarily at the surface level, but at the very core of what makes us human; that this difference in no way implies the superiority of some over others, or dehumanizes certain groups; quite the opposite. It implies that there is more than one way to be human. It implies that in order to achieve personhood, one does not need to first establish similarity to the normal or the typical. One does not need to change their ways, to mimic, or pretend. One can be divergent, even radically so, and still be just as bit as human as someone who is the very definition of typicality.

Kristin Bumiller wrote about this in her 2008 article entitled ‘Quirky Citizens: Autism, Gender, and Reimagining Disability’. She believes that autism advocacy, and the neurodiversity movement in particular, has much more to offer society than ‘just’ promoting acceptance of autistic people (crucial in itself). “In their quirkiness”, she writes, “[autistic people] contribute to a culture of citizenship that fosters equality without sameness.” Neurodiversity fosters citizenship based not on sameness nor on difference (because both imply the existence of a benchmark norm), but on inclusion and acceptance; on individual roles and contributions. “Although neurodiversity is most important to people who identify as being on the spectrum,” she later adds, “it also has the potential to enrich society and change how we understand ourselves and other people.” (2008:982)

And how grandiosely was this potential realized by the protagonist of My Name is Khan, whose life-course is continuously affected by politics of differences. His brother rejects his Hindu wife. “You cannot marry her, it’s Haram!” he says. “She is a Hindu. There a lot of differences between them and us, understood?” to which Rizvan replies, “No, there’s no difference. Good people, bad people. There’s no other difference.” The 9/11 attacks on the World Trade Centre lead to a wave of hatred in the US; particularly towards Muslims, but anyone with a brown skin is suspect. His step son is killed in a racist attack. His wife sends him away, blaming his ethnicity for her son’s death. On his wanderings, he is the target of suspicion, fear, and ridicule, due to either his skin color, his creed, his autism – or all of these combined. His donation to a fund raiser is denied, as it is an event “for Christians only”. “Honey, keep it,” he tells the receptionist, “for those who are not Christians in Africa”. He is lodged by a kind Georgian Black woman and her young son, whose older brother has recently died in the war in Iraq. In a memorial service in the village chapel, he is asked to say a eulogy for his step son. To recap: in a Southern US state, In a Christian Church, in a village populated by African-Americans who bereave the death of their sons in Iraq, the Muslim Khan eulogizes, in Hindi, his son, a Hindu, who was killed by white Americans because of him having a Muslim last name. Get the picture?

Differences are omnipresent in My Name is Khan, and the protagonist is, we are made to believe, in the very best of positions to rise above these differences (without being oblivious to them, however, as one might think), and bring people of all colors and creeds together. To help each other out. To wear their cultural identities with pride, and to stand up against bigotry, prejudice and xenophobia.

In embodying a type of difference that in a way eclipses all other differences, Rizvan imagines a society where differences are respected, and where people are judged according to deeds rather than lineage, skin tone, or religious beliefs. To what extent does this tell a story of autistic people in general? Or even about autism itself, as a social category? I’m looking forward to hearing your thoughts on this. Please comment and share hits blog with others who might be interested.

And why not end with this lovely quote:

“The Book Different Minds says that people like us can’t express their emotions in words but we can write them easily. I can fill thousands of pages, millions of times with ‘I love you Mandira’. But not once could I say it to you. Perhaps that’s why you are angry with me … meanwhile whenever I have time, I will write all that I couldn’t say to you. And then, you will love me again. Insha’Allah.”

Mary and Max

Mary and Max

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

How can we make sense of this statement?

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

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

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

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

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

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

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

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

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

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

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

Mozart and the Whale

I was never a big fan of the romantic comedy genre. While some of these movies are often admittedly entertaining, they always leave me feeling a bit cheated. I do enjoy myself; I laugh, I get emotional, I sympathize with the characters, and I’m often completely engaged with the protagonists’ relationship, rooting for its success. But then, as the movie draws to its inevitable happy ending, I start to question the credibility of this whole thing. I start to reflect critically, and usually realize that the story was a bit too… much; the breakups too dramatic, the gestures too grand, the female protagonist too stereotypically cute, the male protagonist too stereotypically charming, and their love way too unreasonable. I then regret actually having been made to feel something, wasting sadness or sympathy on such an obvious falsity. I even feel I was cheated into laughing – odd as that may sound – because (except for in the first 20 minutes or so, where the jokes are usually quite good) it’s always that kind of laughter that stems from being surprised while overly emotional; like in Pretty Woman when Julia Roberts bursts into laughter when Richard Gear hands her the diamond necklace and then shuts the box abruptly. It’s not really funny – unless you’re four – but you laugh anyway. “What did I go through all that for?” I think angrily. What did I gain? I feel duped! Give me back my 1 hour and 45 minutes! And more importantly, give me back my cynical faith in the inherently pessimistic and sarcastic nature of the human spirit.

Well, that was pretty much how I felt watching Mozart and the Whale.

But I have to say, that’s not all bad. See, I’ve been learning about autism for a while now; reading personal memoirs, papers and books in the humanities and social sciences as well as studies in the natural and medical sciences. Reading articles in popular media, and watching documentaries and lectures – as well as movies and series. And autism, I found, is almost always talked about in this earnest austerity; like it necessarily warrants a very grave face, the one you would wear at a funeral. (Example: recently I applied for a research grant for an ethnographic study on emotional experiences in autism. The reviewer rejected my proposal for what I thought were entirely unfounded reasons, ultimately suggesting that I might modify my research to focus on ‘distress’ as a main theme. Why distress, I wondered? Why not love, pride, aspiration, or attraction? Why assume that the only way to talk about autism is through negative prisms?) Yet at the same time I also know autistic people; and our conversations are rarely austere. We share laughs, enlightening discussions, as well as mind-numbing chit-chat (alright, not so many of the latter). Sure, sometimes difficult experiences are talked about, where earnestness is indeed in order. But it’s not my impression that that’s the norm. It is not the only way to talk about autism.

Anyway, I found watching Mozart and the Whale to be kind of a multi-layered experience. In the beginning, I enjoyed it tremendously; the writing is good (in that pristine yet banal sort of way), the acting is pretty great, and the whole thing is done really professionally – as romantic comedies usually are. So I laughed, I got emotional, I sympathized with the characters, and rooted for them. Then, as the movie was drawing to a close, I started getting a bit angry, as it dawned on me – like it always does in this genre – that I am being duped. Why did they break up? I understand they had a fight, fair enough, but to actually break up over a thing like this? (This applies to each of the three times they broke up). Why did Izzy get so mad when Donald freaked out when she rearranged his apartment? She did this without asking him, and he’s obviously into order and routine. How about some understanding on her part? And him, how about some self-respect? This girl plays with his feelings like a marionette. I’m not saying forget about her, because she’s really cute and all and he obviously loves her, but how about calling her out on her overreacting whenever he does the slightest thing to upset her? How about these two guys have a CONVERSATION between them? You know, actually TALK about what’s bothering them? That’s kind of a major thing in relationships (for a fantastically angry and eloquently written review of the film check out this post by Caroline Narby).

But then, I was overtaken by yet another feeling, and that’s the one I’m still carrying now; it’s actually pretty cool that a movie where all the characters are autistic, and where autism is the main theme (well, aside from love; it is a romantic comedy after all), is made as just another movie in a genre. Not trying to educate, not trying to scare, not trying to draw a meaningful lesson on human nature, not even trying to promote tolerance or acceptance (not that there’s anything wrong with that); just another romantic comedy, where the characters happen to be autistic. Obviously, as far as representation of autism goes, it’s got its flaws (again, check out Caroline’s review). But still, this movie makes you want to put politics aside, and just say “hey, I just moderately enjoyed a mediocre movie about autism, without it antagonizing me by making a huge deal out of itself”. That’s a nice accomplishment I think. Maybe it even does teach a valuable lesson; sometimes autism is not the most important thing in autistic people’s lives. Sometimes it’s just something some people have to live with, while busy with work, errands, family, and relationships; in short, while occupied with living their lives.

Anyway,

I want to talk about one specific event that happened to Donald and Izzy. When Donald’s boss comes over to their house for dinner, Donald asks Izzy if everything could be ‘nice’. Isabelle interprets this (probably justifiably so) as a request that they act ‘normal’, and that makes her upset. She responds by acting – well, I’m not sure how to describe her behavior, as she’s not being herself, but not what you would stereotypically refer to as ‘normal’ either. She basically goes out of her way to make both Donald and his boss feel uncomfortable. Which I found was quite rude, seeing as he did ask her nicely and this dinner means a lot to him. Why not just tell him you were hurt by this request and that you refuse to change your behavior for his boss? That’s a very legitimate stance. Instead, she chose to act all awkward and bizarre. Anyway, that’s not my point. My point is that this scene, I think, offers an opportunity to reflect on what seems to be a very dominant theme in the lives of many autistic people. The notion of normality, and the demand that autistic people either embrace (mimic) it, or reject it, or do both alternately.

An important concept that will help us discuss this matter is ‘discourse’. Basically, discourse refers to any loosely connected cluster of texts, written or spoken, that subscribe to a certain attitude or perspective towards a particular field or domain. For example, you have the gourmet discourse, where unique and delicate tastes, textures and smells are glorified; then you have the health discourse, with its emphasis on nutritious consumption, breaking food down to its dietary elements; and you have the vegetarian discourse, which infuses food-talk with notions of morality and conscience. Clearly, these aren’t the only discourses on food, nor are they mutually exclusive. In this sense, bringing up ‘discourse’ is more of a working tool than it is in any way an objective descriptor of reality.

Similarly, there are different discourses on autism. Again, these are not mutually exclusive, and are very far from static; instead they are fluid, dynamic, and contested; reality is never so simple that it can ever be accurately sketched with such ease. But this sketch is still useful to appreciate the various influences that affect our understanding of things. Broadly put, there are two main discourses on autism, which are mostly in opposition with one another. On one side is the biomedical discourse, otherwise referred to as the deficit model, which views autism as essentially a disease, impairment, or disability. It seeks to find the causes of autism; trace its genetic, neurological, or cognitive mechanisms; find cure or treatment; subdue autism; alleviate its symptoms, and ultimately normalize autistic individuals. Medical professionals, as well as researchers in genetics, neuroscience, or psychology are usually prone to this kind of discourse (also promoted by various types of organizations), which they, in turn, reproduce and reify.

On the other hand is what’s usually referred to as the neurodiversity discourse, or the social model. In this discourse, autism is not seen as an impairment but as a difference, a form of human diversity. The autism traits (the equivalent of what the biomedical discourse refers to as symptoms) are considered ontologically inseparable from the autistic person, and thus there is no desire to be rid of them, lest the person him/herself will simply cease to be. This discourse emphasizes the role of society and its institutions in the disabling of autistic people, by way of marginalizing, silencing and othering; punishing for atypical behavior; and glorifying normality while devaluing difference. Instead, according the social model, society should be more accepting and tolerant towards all forms of diversity, including autism.

So you can see how normality is a central sticking point in discussions about autism. The very acceptance of such a thing as ‘normality’ – as an absolute and a positive – will most likely lead one to accept the biomedical discourse. Alternatively, leaning towards the neurodiversity model will unavoidably drive one to reconsider what ‘normal’ might actually mean, to the extent of arguing that there is really no such thing – or at the very least that there shouldn’t be.

Except, of course, there is such a thing as ‘normal’, because we all use it. We all know what the word means. So the question to ask might not be ‘does normality really exist?’ but rather ‘what sort of power dynamics do current notions of normality reflect?’ What ideology is served when ‘typicality’ is rearticulated as ‘normality’? What institutions will have trouble justifying themselves once ‘normality’ is readjusted to include autistic behavior? And how are people’s lives affected by the idea that normal=good, and abnormal=bad?

You might think that normality always existed. After all, what’s more natural and inevitable than drawing a line separating what’s normal and what’s abnormal? But this awesome graph illustrates just how recent, and therefore contingent and far from inevitable, our obsession with normality really is. The proportionate use of the words normalcy and normality has increased fivefold in literature over the last century.

Assuming that the possibilities for ‘being’ are infinitely varied, discourses constitute our best tool for tracing the influences that made people ‘be’ the way they ‘are’. They are a handy substitute for the still popular concept of ‘culture’, whereby it is often argued that it is culture that made you the way you are. Not that this statement is entirely wrong, it’s just terribly inaccurate. ‘Cultures’ are not homogenous; within any given culture there are hundreds or thousands of different available discourses which one can subscribe to; usually people subscribe to discourses which are most relevant to them in terms of age, gender, religion, ethnicity, social status, education, geography etc. Yet importantly, one very often has to make a choice – either conscious or unconscious – between different or even opposing discourses. Another alternative is to mix different discourses, taking just a bit of each.

With regards to autism, then, the choice is not so much between normality and abnormality; instead, as Nancy Bagatell, the medical anthropologist, has suggested in her 2007 article, being autistic involves a constant struggle to orchestrate two opposing discourses; the biomedical and the neurodiversity. Are my traits merely a form of difference, or are they symptoms to be subdued? If I wish to be alone, is that a valid choice or must I urge myself to seek company? In difficult times, should I fantasize about a cure for autism, or about a more just, tolerant, and accepting society? And mostly – should I lay my best efforts in attempting to pass as what others consider to be ‘normal’?

The conflict between Izzy and Donald is a marvelous example of this dilemma, primarily because the filmmakers do not suggest that any of these choices is necessarily right or wrong. Donald has a job which he loves, and therefore feels the need to impress his boss; this requires (presumably) that he and his girlfriend behave appropriately at dinner. Izzy, on the other hand, feels that her only way of getting by in the world is by not hiding her eccentricities, instead making them work for her advantage. Importantly, as the movie demonstrates, this is more than just an idle inconsequential decision; it affects relationships, employment, and social status. We, perhaps unfortunately, live in a world where appearances matter. I would think that the choice of whether to act normally or not is never an easy one. Bagatell indeed suggests that this necessity to constantly orchestrate these different ‘voices’ in choosing who to ‘be’ is itself a source of much stress and anxiety in the lives of autistic people.

But on the bright side, seeing as what we’re really talking about is not ‘normal’ vs. ‘abnormal’, but rather this discourse vs. that discourse, there is room for change. Currently, the dominant discourse has it that there is just one way of acting that is considered normal and appropriate; but like any other discourse, this discourse is also susceptible to change. Hopefully, the day when ‘autistic behavior’ would not fall outside the remit of the norm; or otherwise, the day when normality, per se, would cease to be in itself a value – might not be too far ahead.

What do you think about all this?

P.S. Did anyone else think the scene where they all go to the bleachers, boys on one side on girls on the other, is a homage to that famous scene in Grease?

References:

Bagatell, Nancy. “Orchestrating Voices: Autism, Identity and the Power of Discourse.” Disability & Society 22, no. 4 (2007): 413–426.

Lars and the Real Girl

In a peaceful Northern U.S. town, Lars lives in the garage of the house where his older brother and pregnant sister-in-law live. Generally speaking, he lives a rather unremarkable life. Karin (sister-in-law) describes him on one occasion as “a sweetheart”. He really is. And yet, something about him does stand out. For one, he doesn’t go out much, except to work and church. He continually rejects his relatives’ breakfast invitation, using whatever excuse comes to mind. He is oblivious of his attractive female co-worker’s advances, or maybe he just acts as if he is. He’s shy, uncomfortable in social situations, and an all-around goodhearted guy.

His un-remarkability is put into question when one snowy afternoon he introduces to his bemused brother and sister-in-law his new girlfriend Bianca; an anatomically correct, human-size, marginally life-like doll he ordered from the internet and who arrived in a crate. To him, Bianca is 100% real. He has a delusion, his doctor/psychologist says.

I don’t know if Lars is autistic, and I’m in no position to say (who is?) To be honest, we are offered another perfectly valid explanation for his idiosyncrasies. He was orphaned from his mother at birth; he was raised by a depressed and anti-social dad (who may or may not have blamed him for his mother’s passing); his brother had admittedly ran away as soon as he possibly could, leaving Lars and his dad behind, only to return after the latter’s demise. That sort of depraved childhood is likely to leave its mark on any person, autistic or not. But then there is his enhanced sensitivity to touch, whereby he describes being touched as inducing an excruciating, burn-like sensation; which possibly means his is not strictly a psychogenic disturbance. Autism does not usually involve delusions (although according to these guys http://aut.sagepub.com/content/9/5/515.short, it often does – what do you think?). But just because someone is delusional does not mean they weren’t also autistic to begin with.

Anyway, having made a huge deal about autism not existing if it is not named in my previous post about The Bridge, this whole discussion is a bit redundant. What is the point of trying to diagnose a fictional character? It’s just speculation. I guess what I’m trying to say is – I’m not too concerned about whether Lars is autistic or not. But I do want to talk about the movie. So for the sake of argument, say he is autistic. Fair enough?

Autism is very often thought of in terms of a social disability, social impairment, social deficit; autistic people often describe difficulties in initiating social interaction, maintaining social relationships, interpreting social cues, or adhering to social norms. All these said difficulties have one very obvious thing in common – the use of the term ‘social’ to describe them. But what if we are simply using this term all wrong? What would happen if we just tweaked its meaning a tiny bit, so that it stands for something a little different? What if ‘social’ stopped referring exclusively to interaction between people, and used to refer to interactions in general? Suddenly, we get quite a different picture. Do any of the above claims still hold true?

Of course, this is not my own original idea. If I’m going to make such an outrageous claim, I’m going to have to lean on someone more authoritative than I. Bruno Latour, the French philosopher and anthropologist, wrote, “I think time has come to modify what is meant by ‘social’” (2005:2). His point was this: ‘social’ is not a thing. It does not denote any kind of substance that is essentially unique, and for which a distinct explanatory framework is required, and for which distinct laws apply. The term ‘social’, he argues, is merely a by-product of another – equally meaningless – term; ‘Natural’. When physicists, biologists, geologists and the like started going about accounting for all sorts of phenomena, they designated them ‘natural’. i.e., deriving from nature, independently of human actions. Sociologists then came along, and rightfully started wondering this: what about all those types of connections that can’t be explained using newton’s laws, osmosis, or photosynthesis? How should we account for the types of connections that occur between people, regardless, and equally independently, of said ‘natural’ processes? Such connections were designated ‘social’.

Fair enough. So what’s wrong with that? Well, that hardly any relationship, simple or complex, is ever purely ‘social’. For example:

Take the relationship between Gus and Karin. Theirs is quite unambiguously a ‘social’ relationship, right? They’re a married couple. Well, no, not unambiguously at all, because her getting pregnant by him was obviously a biological process, involving sperm cells, the uterine tube, the corona radiata, ooplasm, and an acrosome reaction – if any of these fails to function, there is no conception. And seeing as this pregnancy is an extremely meaningful aspect of their relationship… Would it have been the same if ‘biology’ hadn’t stepped in to do its part? Their relationship is based at least as much on biological processes as it is on ‘social’ ties. And yes, it relies also on physical, chemical, legal, linguistic, and a million other types of ties. Social is but one of them. That is, If you must insist on ‘social’ having any kind of meaning at all.

My point is that ‘social’ is never exclusive of ‘natural’. Latour is arguing that we don’t need these concepts that do us little good but instead only mislead us. Let’s forget about what’s ‘social’ and what’s ‘natural’; what’s actual and what’s imagined, what’s real and what’s fake; and instead let’s just talk about meaningful connections. Specific, traceable, significant connections.

Joyce Davidson and Mick Smith from Queen’s University in Canada read 45 autobiographical works written by autistic authors, and found that in so many of them (approximately half), authors spoke of meaningful connections to non-human (or otherwise more-than-human) objects: animals, trees, flowers, hills, rocks, sand. Sometimes these connections were regarded as easier than interacting with people, hence more desirable. Sometimes they were described as making more sense, having more potential for growth and learning; they were said to be calming, relaxing, rewarding, enjoyable, fun. Davidson and Mick make a great point when they ask: why should we consider these connections as any less meaningful than if they were between people? Is it just because old-fashioned humanism would have it that way? Why not take these people’s accounts seriously? If they say these are meaningful connections, why not take their word for it? Latour would similarly say: if the connections are indeed meaningful (except he means in an empirical, non-subjective way, i.e., having a meaningful impact on real-world events), who’s to decide that they aren’t? By all means, let’s trace these connections. Let’s see what we learn!

Whether or not one morally approves of Lars’s somewhat unusual love affair (I admit I was shocked and embarrassed at first – I do literally get embarrassed for characters on film), one has to admit it did him a world of good. It changed Lars. It helped him develop a sense of meaning, self-confidence, self-esteem. It helped him regain trust in people. It made him happy. It made him whole. Bianca did all that! Insofar as she was the catalyst of this series of events, Bianca is an incredibly meaningful character in Lars’s life story – and of all the town’s people as well. She is an extremely significant actor in Lars’s life. Would this process have happened without her? No, it wouldn’t! Alright, did she MEAN to make it happen? No, of course not, she’s a doll. And yet, doll or no doll, she DID make it happen, through and through. Her relationship with Lars, their connection, made it happen.

Should relationships with non-humans (animals, plants, rocks, or inanimate man-made objects) be ignored? Should they be tolerated? Should they be discouraged? Should they be seen as psychologically perverse, morally questionable, damaging? Should they be seen as allegorical or symbolic? An extension, compensation, replacement? I suppose that by and large, the answer to all these questions is a resounding No. Such relationships should be taken seriously. After all, everyone has them. A favourite shirt, a beloved chair, a childhood toy, a cherished old car… Not to mention a pet. Such relationships should be respected. And when they are respected, maybe we get a somewhat different picture of what autism really is.

What do you think? Do you agree? Have you had similar experiences? Please leave your comments!

P.S., Lars says the exact feeling he gets when someone touches him is like when your feet have frozen from the snow, and then let to thaw too quickly. By the end of the movie, he shakes hands with Margo, gloves off, with great intent. Moral? Before, he was “frozen”. A human touch meant too much, too soon. Thanks to Bianca, he gradually thawed, and a warm touch doesn’t hurt him anymore. That’s nice, I think.

	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