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

 

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December Clouds

 

Wordcloud3I got a bit of an urge to get creative with this post. Maybe it’s the holiday season.

Well, to be honest, I’m not sure copy-pasting a list of words into a word-cloud-generator counts as being very creative, but it is a change from the usual flux of words that normally fill this blog. And I do like what came out. In a way, this word-cloud is a pretty decent visualisation, I think, of my work in the past 18 months or so. And I’ve already written about how difficult I find it to visualise any aspect of my study.

This pile of words you see here is compiled of the themes of my study. Basically, every interview I did, every note I had taken, every blog-post I had read, I categorised into several themes. So for example, if Alan had told me about how his friends helped him when he became overloaded by the music and lights in a hotel lobby, I would classify that story in my notes as relating to sensory sensitivities, sensory overload, and friendship.

So the list you see here is basically a list of all the major topics my interlocutors have been discussing. The bigger ones are the ones which were more common than others. But if any topic appears here, this already means it was quite common.

In other words, this is the list of things my interlocutors – namely autistic adults – were mostly occupied with. These were the things that concerned them, interested them or worried them. So in a sense, I find this to be a relatively decent approximation of what being autistic might mean. Well, in some roundabout way, anyway.

Of course, not all these topics are interesting or relevant to everyone who is autistic. That almost goes without saying. But the whole project of trying to understand autism – and this is true whether you’re a neuroscientist, teacher, advocate or anthropologist – involves making some generalisations. Nothing applies to everyone, and some things may only apply to a few and still be important. But judging from all I have learnt so far, this word-cloud, as a whole, represents quite reasonably what autism seems to mean to autistic people.

It represents what aspects of being autistic seem to matter most.

I should add that this list is of my own making, in the sense that an interlocutor of mine did not necessarily have to utter the word ‘loneliness’ or ‘exclusion’ for me to attribute those specific themes to her account. So for example, she might have been talking about struggling to find company, or being rejected by a social group where she tried to fit in. Then it would be my judgement to deem that reflection as indicative of an experience of exclusion or loneliness. In that sense, I have as much a role in shaping this list of themes – if not a bigger role, even – than my interlocutors did. There’s something just a bit problematic, even reductionist here. I’ll admit that. Every individual’s experience is singular and unique, and lumping unique stories into broad categories is creating a pretty artificial lens through which to view things. But then again, this grouping is only meant for my own ease and convenience when searching through my notes, trying to figure out what questions I should be asking about autism, and what sort of material I might use to try and answer them. So these themes are really mere signposts. Just my own way of creating some sense of order for myself amidst the many rich and nuanced stories I’ve been collecting.

I like this list, because it paints a picture of autism as neither inherently good nor bad. As neither merely a neurological condition nor as just as social category. As both something one is and as something one does. And it colours autism, as any text dealing with it always should, with the multifacetedness and nuance that it deserves. And also, it’s pretty.

Happy Christmas, happy Hanukkah, and a good new year.

 

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The limits of body, the limits of language

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

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

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

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

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

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

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

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

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

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

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An Archaeology of Funding Applications

As I was going over my folders recently in search of a paragraph I remembered writing at some point and of which I lost track, I came across something interesting. It was a letter I sent to the head of a funding body to which I applied for some research funding a year or so ago.

I was upset when I wrote this letter; my application has just been rejected. But my dismay at this professional failure was overshadowed, I recall, by the reasons for the rejection, as these were specified by my application’s reviewer. These stem out for my response letter, so there is really no need to repeat them. In reading the referee’s comments now, by the way, I do see they weren’t really all that bad. But they were certainly misinformed. And so my ‘letter of complaint’ is still, I feel, quite valid.

I have no real reason to put it up here, except that when reading it now, I found it rather enjoyable. A pretty decent piece of writing, if I may say so myself. A shame that only one person would get to read it, I thought (especially since that person, namely the head of the funding body, has brushed it aside with calm). And yes, it does say something, perhaps, about the decision-making processes that go behind research funding. Not that they’re necessarily bad. But maybe, sometimes, they might be just a bit misinformed.

Dear sir / madam,

I am writing to you with regards to the resubmission of my grant proposal entitled “Experiencing Emotion and Emotional Experiences among Individuals with Autism”. I would like to humbly urge the committee to reconsider its decision to reject the grant proposal, for the reasons stated below.

While I honestly appreciate the reviewer’s comments, I would like to express my sincere doubt as to whether he/she is sufficiently familiar with the field of autism to reach a qualified evaluation of the worth of my proposal, and its possible feasibility and contribution to the field in question.

Autism is a spectrum of conditions with differing levels of severity and social functioning. In his/her review, the reviewer uses the term “highly autistic” twice, and once uses “severely autistic”; I myself have not used neither of these in my proposal! My proposal merely expresses a desire to study autistic people. Indeed, if I only meant to include severely autistic participants, some reformulations of the proposal would be in order, but that was never my intention. I fear the entire evaluation of my proposal was made on the basis of this very false reading.

Furthermore, I must admit that I was somewhat shocked to learn that according to the reviewer, “…in severely autistic individuals, emotions are a “black box” that scientists, therapists, teachers, and parents struggle to untangle”. It would appear that two decades of autism self-advocacy and activism, promoting notions of diversity and understanding, and combating prevalent stereotypes– have all escaped the reviewer entirely. I would therefore like to offer a crucial correction:

While it is certainly true that managing, discerning, expressing and interpreting emotions may pose considerable challenges for autistic people, to argue that their emotions are in any way a “black box” is alarmingly misinformed, and frighteningly reminiscent of Bruno Bettleheim’s destructive and long abandoned “empty fortress” metaphor (1967). I urge the committee to find one recent work by a researcher of autism that would even come close to making such an unfounded claim.

Having studied autism and engaging in meaningful conversations with autistic individuals for nearly two years now, I can state without doubt that many (although not all) adults with autism are reflexive, communicative, and articulate social agents, given the right conditions. They are thus in a very good position to speak and reflect about their emotional states and experiences – and indeed about their difficulties with emotions. In fact, they are in a better position to do so than anyone else is, and they should be given a chance to express their expertise, and to contribute to the academic discourse which too often revolves around them, but fails to include them.

This is particularly true given the unfortunately popular prejudice that emotional experiences of autistic people are not even worth studying, because they are trapped in some imaginary, impenetrable box (and my theoretical perspective views emotions as intrinsically relational… how could a box hold a connection?)

Yes, emotions are complex, in autistics and neurotypicals alike. Yes, neither the natural sciences nor the social sciences have any definitive answers as to what emotions “are” (although several anthropologists have developed fantastic theories to that extent). But should that prevent us from studying them, from trying to make sense of them, from appreciating their importance in people’s lives? Also, since when do social anthropologists shy away from difficult questions, simply because “scientists, therapists, teachers, and parents” struggle with their meaning? If anything, that is in itself a good enough reason to do research!

According to the reviewer, “there is a huge literature regarding idioms of distress, for example, that should be taken into consideration.” Why? Why is it assumed that distress must be a prominent theme in this work? There is an equally large body of literature on love, friendship, sexual attraction, pride, or compassion; and none of which were explicitly mentioned in my proposal, which deals with emotional states at large. Distress? Yes, of course, that too. But this particular emotional state will only outweigh others in my work if it is found to outweigh others in my participants’ lives. My preliminary research shows this is not the case.

Finally, the reviewer questions whether “simply following subjects through their online activities or attending an autistic conference” will provide me with sufficient and reliable ethnographic data. My response is simple; No, it will not. That is why many more methods – which the reviewer for some reason chooses to ignore completely – are mentioned and elaborated on in my proposal. They include accompanying interlocutors in their daily lives, i.e. family life, work, studies, and autism related social activities, while forming meaningful relationships with them based on mutual respect; as well as conducting semi-structured in-depth interviews. The online aspect of my research is crucial and exciting – but is quite far from being my main source of data. Why would the reviewer ignore all these? I honestly do not know.

I appreciate that I am still in the beginning of my career, and still have a lot to learn. I acknowledge that my proposal is not perfect, and might be improved in various ways. I respect the opinions of those with more knowledge and experience than I. However, in this case I feel my hard work was not taken under serious consideration, and was rejected offhandedly due to a lack of familiarity with the field of study in question. I therefore respectfully ask that my proposal goes to the next stage of selection, to be read and judged by someone more engaged with the anthropological study of autism and/or emotions. Thank you, and I look forward to hearing back from you soon.

Best regards,

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&gt;

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.

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Asking the Right Questions: Reflections on Autism and Anthropology

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

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

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

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

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

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

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

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

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

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Being in-between

 

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

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

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

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

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

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