Autism and equine therapy: “The horses, they just know”

(In this most recent post in our series of guest posts by anthropologists studying autism, it’s a pleasure to have Roslyn Malcolm. Roslyn is a doctoral researcher in at the University of Edinburgh, where she also studied Medical Anthropology at Masters level. She has a background in anthropology and psychology at undergraduate level and has also worked in the equine therapy field for a number of years. This is where her interest in autism began. Her PhD project focuses on the use of equine therapy as a treatment for autistic children and adults.)

 

A horse trainer once said to me, ‘Animals don’t think, they just make associations’. I responded to that by saying, ‘If making associations is not thinking, then I would have to conclude that I do not think.’ (Grandin, 1997: 141).

My entry into the study of autism came with an impromptu visit from the mother of an autistic child in 2010. In the office of a riding therapy centre in Scotland, where I had by then worked for three years, my colleagues and I were thanked profusely. She explained that her son had begun talking for the first time after coming riding. She told us, “he says ‘I love you’ now”. I was grabbed by the story of this mother and child. It was not the first time we had encountered these results. As the number of children with autism accessing the centre rose, so did these reports. As an anthropologist, I wanted to learn more.  How could a horse make an autistic child or adult, popularly defined by empathic and intersubjective deficits, talk?

During exploratory research I talked with parents, therapy practitioners, and teachers. A teacher told me about Joe. “When he was on the horse he would actually talk! In sentences! He would sit up, hold the reins. Amazing, just totally amazing! … He would only do that at horse riding… But there are lots of kids like that, that do things at horse riding that they don’t do at school…it just opens up their world”.

The children began to use social behaviours with the horse – patting, stroking, laughing. These were seen as expressions of empathy. Over the period of sessions (each child attended for at least three months) these expressions would gradually extend to other people in the riding arena, the other children, helpers, teachers and practitioners as the child began to use eye contact, touch, smiling, and ultimately, some began to use words. As one of the instructors Laura said, “over time they start to talk to the leaders or the helpers… they learn how to communicate.” In the equine therapy context, then, horses appear to facilitate a communicative network that allows autistic riders to engage in intersubjective and communicative behaviours, many for the first time.

Laura told me of a child who had surprised his family by talking at the Centre. “The carers that had been bringing him didn’t know that he didn’t talk at home. And it wasn’t until the teachers got together with the parents and told them, ‘he tells his horse to walk on and he says thank you at the end of the lesson’ that they knew their child could talk.  His parents came into the Centre and his mother was in tears. It was at the end of class and the instructor said ‘everyone say thank you to your helpers’. The boy turned, looked his helper in the eye and said thank you.  His mum burst into tears because she had never heard him talking to somebody before”. The parents then encouraged him to speak at home as much as possible.

Over the weeks and months of sessions, incremental benefits are built upon, extending out from initial patting of horses, to communicating with the people in sessions, and further again, to home life, helping autistic riders to “open up”. The children entered into what Olga Solomon calls an ‘ontological choreography’, similar to – yet different from – the one described in her study of therapy dogs and autism (2010 cf Cussins, 1996). I asked about how the horses in particular helped the children and adults. After being told “well, you can’t ride a dog!” one practitioner continued, “I don’t know that you could explain it… the horses, they just know”. This latter phrase continues to emerge as I talk with horse people, and leads me to ask a second question: How can a horse know?

Exploring my own experience of riding gave some insight as to how to begin answering these two entangled questions. For me, when riding all else just slips away, every part of my embodied attention acutely focused on reaching this communicative clarity with the horse underneath me. Relaxed, yet intent on the next movement I ask of the animal, as soon as I think it, the horse knows, picking up on the slightest of shifts in my weight in the saddle, even a tensing of my muscles as I prepare to ask for a change in pace.

These infinitesimal gestures in body language need be clear so as not to confuse the horse. So too do my thoughts: without this clarity the whole thing disintegrates from a pure, fluid flow of thought, body and movement to an uncomfortable, frustrating dis-coordination of two heads, two hands, six legs and one seat. This equine ‘knowing’ referred to is highly embodied. And it is one shared by rider and horse, enacted in practice, in the bodily engagements of riding.

This embodied knowing and empathy flowing between rider and horse may give an insight into how Grandin understands her own mode of empathising. Grandin notes in the opening quote above that her thinking is not abstract but grounded in “just making associations” between concrete experiences. Grandin similarly notes that her mode of empathising is highly concrete, sensorial and embodied: “[I] empathise through senses rather than in a more emotional abstract manner” (2011: 170). So to the seasoned rider, a horse can know, if knowing includes a bodily form of knowledge. Indeed importantly, as Grandin herself notes, if animals cannot know, and indeed think in concrete bodily ways, then neither can she.

Unless you spend a significant amount of time riding, the beauty of these embodied moments of flow are not revealed. Not wanting to import my positive experience of riding to autistic riders in general I researched autistic blogs noting horse riding or equine therapy for reports from writers. This also reflects a deep conviction that the voice of autistic people must always remain a focus in our study of autism.

Grandin notes that horse riding was “joyous” for her (Grandin, 2005: 6). ‘Aspie’, Liane Holiday Willey emphasises that when riding she enters into a “joint comfort zone” with her horse: “the hours I spent teaching my body to mould to my horse, were priceless and precious pieces of my move toward what I call my bilingual world – half Aspie, half neurotypical… On a horse, I am free. My body forgets there is still a tightness that sits in my muscles… On a horse I can forget my baggage and turn my trust over to the animal beneath me and truly, together, we work out what each of us needs to find that joint comfort zone of relaxed beast and relaxed human” (Willey, 2014).

Indeed, that this is a joint process, where both human and horse are active in the process is echoed by Grandin: “a good rider and his horse are a team. It’s not a one-way relationship, either: it’s not just the human relating to the horse and telling him what to do. Horses are super sensitive to their riders’ needs without being asked … That’s why learning to ride a horse is completely different from learning to ride a bicycle” (2005: 6, italics added). The horse then, does not simply operate like a passive object such as a bicycle. It responds, working with the needs of the child or adult to achieve an attunement.

To explore the phenomenon further and in more depth, I plan on undertaking 12 months of observant participation across a range of sites across the UK. As an experienced equestrian, and having worked within these spaces, an awareness of the human-horse attunement will provide a level of access for me into the experience of my informants (i.e., autistic riders, therapy practitioners, volunteers, and parents and carers). The research will explore reports of the efficacy of equine therapy and the facilitated communication suggested by the exploratory research already carried out.

If you are autistic, or have an autistic child and have had experience of using equine therapy to help, please do get in touch @ rmalcolm- at-exseed.ed.ac.uk

*This doctoral project is gratefully funded by the Economic and Social Research Council (ESRC).

References

Cussins, C. (1996). Ontological Choreography: Agency through Objectification in Infertility Clinics. Social Studies of Science, 26(3), 575-610.

Grandin, T. (1997). Thinking the Way Animals Do: Unique insights from a person with a singular understanding. Western Horseman, 1997 (Nov), 140-145.

Grandin, T. & Scariano, M.M. ([1986] 2005). Emergence, Labelled Autistic:  A True Story.  New York & Boston: Warner Books.

Grandin, T. (2005). Animals in Translation: Using the Mysteries of Autism to Decode Animal Behaviour. London: Bloomsbury Publishing.

Grandin, T. (2011). The Way I See It: A Personal Look at Autism & Asperger’s. Arlington: Future Horizons.

Solomon, O. (2010a). What a Dog Can Do: Children with Autism and Therapy Dogs in Social Interaction. Ethos, 38(1), 143 – 166.

Willey, L.H. (2014). Horse Therapy. [online]. Sourced on 13.10.14 from http://www.aspie.com/blog/category/horsetherapy.

 

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Conceptualizing autism around the globe: A special issue of Culture, Medicine & Psychiatry showcasing the anthropology of autism

(In this new guest post, it’s a pleasure to have M. Ariel Cascio. Ariel is an anthropologist specializing in the cultural study of science and biomedicine, psychological anthropology, and the anthropology of youth. She recently received her Ph.D. in Anthropology from Case Western Reserve University after finishing her dissertation in Italian autism services entitled “Biopolitics and Subjectivity: The Case of Autism Spectrum Conditions in Italy.” She can be reached at ariel.cascio@case.edu. Her blog, written in Italian and English, can be viewed at https://arielcascio.wordpress.com/).

The anthropology of autism has been emerging, has emerged, and is here. It is demonstrated by Ben Belek, the autism anthropologist. It is demonstrated by conference panels, special issues, and edited volumes on autism and anthropology. My work as an anthropologist studying autism focuses primarily on biopolitics, identity, and subjectivity. I have studied autism in both the United States and Italy, with my dissertation research emerging from an 11 month ethnographic study of autism-specific services for adolescents and adults on the spectrum. Today, I am invited to talk to you about a recent project, a special issue of Culture, Medicine & Psychiatry which was published in June and of which I am the special editor. This volume includes six articles investigating the autism concept in Brazil, India, Italy, and the United States. This issue has been discussed elsewhere (http://culturemedicinepsychiatry.com/2015/05/06/june-2015-issue-preview-interview-with-guest-editor-m-ariel-cascio/) but for theautismanthropologist, I really want to highlight the ways neurodiversity emerges in these articles, which I will address in the order they appear in the special issue. The strength of this theme is particularly notable as the special issue was not designed around the concept of neurodiversity, yet all of the authors incorporated an explicit discussion of neurodiversity or an implicit discussion of neurodiverse themes.

 

The changing face of autism in Brazil

Clarice Rios, Barbara Costa Andrada

Rios and Costa Andrada discuss two contrasting approaches to autism in Brazilian politics: that of Psychiatric Reform professionals who define autism as a form of ‘mental suffering,’ and that of parent activists who define autism as a disability. The authors explore in depth the Brazilian context, unpacking how this conflict cannot be reduced to social/medical models of disability. Regarding parent activists, the authors write that their efforts:

“certainly represented a political maneuver to gain visibility and support to their cause, it also exposed them to rather progressive ideas from the field of disability activism such as neurodiversity. Thus, autism-as-disability cannot be simply reduced to a medicalized and biologized way of conceiving autism, but instead becomes a catalyst to struggles for recognition, rights, and justice.” (p. 230)

This article provides a detailed look into autism politics and the impact of neurodiverse philosophy in Brazil and furthers disability studies theory.

 

Rigid Therapies, Rigid Minds: Italian Professionals’ Perspectives on Autism Interventions

M. Ariel Cascio

My own article looks at conceptualizations of autism within several autism intervention programs discussed by Italian professionals, particularly the concept of rigidity as a characteristic of both people with autism and professionals who work with them. I suggest that this shared metaphor of rigidity may help bridge a gap between autistic and neurotypical minds following a perspective of neurological diversity:

“I similarly propose that the semantic link of rigid therapies with rigid minds may also help practitioners work. By discussing rigidity as both a characteristic of many people with autism and a potential pitfall—that is, characteristic—of their work, practitioners may be consciously or unconsciously bridging the gap between themselves and the people with autism with whom they work.” (p. 250)

This article provides an in-depth look at professional discourse about autism and considers neurodiversity themes.

 

Custodial Homes, Therapeutic Homes, and Parental Acceptance: Parental Experiences of Autism in Kerala, India and Atlanta, GA USA

Jennifer C. Sarrett

Sarrett compares homes in the United States and homes in India, loosely classifying them as therapeutic and custodial respectively depending on the ways the homes are organized with respect to the child with autism within them. Sarrett compares levels of parental acceptance of autism in these two types of environments, and suggests exposure to neurodiversity perspectives as a way to foster parent acceptance. Regarding therapeutic homes focused on autism interventions, she writes:

“Engaging in these strategies is not incompatible with accepting autism. On the contrary, neurodiversity and autism acceptance can be useful in treatment decision-making processes and reduce the utilization of unfounded and dangerous “cures”.” (p. 272)

This article explores how parents in different contexts can mobilize neurodiversity ideas while caring for their children.

 

Parenting a Child with Autism in India: Narratives Before and After a Parent–Child Intervention Program

Rachel S. Brezis, Thomas S. Weisner, Tamara C. Daley, Nidhi Singhal, Merry Barua, and Shreya P. Chollera

Brezis and colleagues, also working in India, analyze parent narratives to understand their conceptualizations of their children with autism and their relationships with them before and after a parent training program. Brezis and colleagues report on this very narrative of parental acceptance and the lack of a reliance on a notion of “normal” after a parent training program. Regarding the program, the authors explain:

“Rooted in the particular challenges of Indian families and societies, AFA’s [Action for Autism] visions are closely informed by global autism movements, including parental advocacy groups and the neurodiversity movements.” (p. 279)

This article explores the impact of this program, and its neurodiversity messages, on the ways parents describe their children in speech narratives and on the impact this might have on parental acceptance and goal-setting for their children.

 

Making Meaningful Worlds: Role-Playing Subcultures and the Autism Spectrum

Elizabeth Fein

Of all the articles in this special issues, Fein’s focuses most explicitly on neurodiversity. Specifically, she explores neurodiversity in practice through a rich ethnographic account of a roleplaying camp for youth with autism in the United States. She explains:

“This paper thus seeks to explore not only the ways in which subcultural communities shape the meanings of neurodiversity, but also the way that neurodiversity shapes culture. Patterned neurocognitive variations, including but not limited to those seen in clinical conditions such as autism, help to organize practices and social orientations into familiar sets. Some of these will become deeply meaningful to participants, providing opportunities for healing and social integration.” (p. 301)

This article provides a rich ethnographic account of a particle autism space in the United States while furthering anthropological theory.

 

“But-He’ll Fall!”: Children with Autism, Interspecies Intersubjectivity, and the Problem of ‘Being Social’

Olga Solomon

Solomon presents detailed transcripts of therapeutic encounters with and without the presence of therapy dogs, arguing that “being with” these animals creates a different intersubjective environment and therefore different opportunities for sociality than human-only contexts. Although Solomon does not explicitly discuss neurodiversity, she like Fein challenges the deficit perspective of autism. Solomon’s discussion of human-animal interaction broadens the concept of intersubjectivity, which people with autism are often said to lack, and suggesting that the context may greatly impact how much a child with autism “is” intersubjective and social. Solomon writes:

“Given the limitations that ASD is thought to impose on sociality, it is important to understand how children’s interactions with companion animals afford intersubjective experiences that humans-only interactional substrates may not.” (p. 337)

This article provides a rich exploration of therapeutic contexts using animals while furthering anthropological theory.

 

In short, this collection will be of interest to anthropologists and to anyone interested in autism through its contribution to theory, its rich description of a wide variety of contexts, and its discussion of neurodiverse themes. The special issue, including these articles, my introduction, and commentaries by R. Richard Grinker and Pamela Block, can be accessed at http://link.springer.com/journal/11013/39/2/page/1. More information on my own research can be found at arielcascio.wordpress.com (in Italian, but can easily be translated to English with your favorite web translator).

 

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Sensory travels – formulating a personal guide book of sensory word tools

(In this new addition to our series of guest posts by social scientists studying autism, it’s great to have Hanna Bertilsdotter Rosqvist. Hanna is an Associate Professor in Sociology, and Senior Lecturer at the Department of Social Work, Umeå University, Umeå, Sweden)

I love word tools.

While I am writing this I am two weeks away from going home to Umeå, situated at the east coast in the northern part of Sweden. I’ve been travelling since 21st May, visiting research colleagues in Toowoomba, Australia and now in Auckland, New Zealand. Except from meeting up with inspiring work mates, I have also been thinking and experiencing some personal emotional stuff closely connected to my research about autism and things I’ve learned from autistic people.

This blog post is going to centre around useful words I have encountered the last half year. Some of the words I have found on blogs written by autistic people in Sweden, some of them may be my own interventions, though inspired by encounters with autistic self-advocates in Sweden and similar minded introverts. I need, sometimes new, words to make sense of myself. While being me is sometimes a bit confusing. And I think it is confusing because my experiences often don’t match with what I think of as an extrovert normativity surrounding me. Being extrovert means to get energy from being social. Whether for me as an introvert whom also is quite sensitive to noise and light, being social may be a pleasure, but it is draining energy.

So I start. In the end of last year I was sensing I couldn’t really understand why I get so tired of social interaction. I tend to get very intense when I am socializing. I suppose I focus very hard on all emotional and social communication in order not to miss anything. There is not dwindling of the mind back and forth but an intense absorbing of everything in the social interaction. So after some intense socializing I turn speeded. My brain is on a higher gear. And suddenly I start to get very tired. Feels overly filled, overwhelmed, with emotional and social input.

Social hangover. The day after the day of intense social interaction I mostly sleep, and when awake I feel slightly low and slow. After some time alone I start to get more energized. But I started to think of it as similar to a friend of mine having a hangover after a party night with heavy drinking. After some surfing on the web I happily found that my problems weren’t that original. There was an autistic female blogger writing on the phenomena she called (in Swedish, social baksmälla) social hangover. This helpful word let me think about the cost of social interaction, whether I want to choose ‘heavy social interaction’ (which in the right environment and with the right people is very enjoyable) including the social hangover the day after, or if I want to do some lighter social interaction (not that long, perhaps only with people I like and already know well), or perhaps I need to be completely alone.

Recharging. I think the social hangover is something I need to accept, as part of my life. I have started to think of my energy level as something I need to count upon; what is low/moderate/demanding energy wise. I know all social things take energy. Like if I was driving a car, and if I drive too long without refueling the engine will stop. I need to be aware of what is taking more or less energy. Perhaps not always in order to preserve, but in order to understand why my energy level suddenly is lower than I thought it should be. Or the amount of energy recharging needed. And what I need to do to recharge. What is recharging for me.

Emo crashes. I try to avoid the “emo crashes”. I got one during a coffee break in Toowoomba. Professional socializing with strangers in a noisy environment, low energy level to begin with after some intense social work days with my research colleagues. Although I didn’t realize how low it was until I suddenly started to feel like crying and didn’t feel I had the energy to listen to and participate in small talk any longer. And I suddenly realized I really needed some acute alone time Now. I went to a toilet nearby and sat there for a while at the floor of the toilet and cried, waited for the energy level to get back at least to the level where I would be able to tell my co-researchers I needed some alone time and then move to a better place to keep on recharging there. The first time I started to think about these emotional crash landings (when the energy is suddenly just too low, when I need an acute asocial alone time, probably including some sleeping, at least some laying on my back with my earplugs in a safe and calm environment) I was just very scared I had come across the “burn out”. I thought I had been working too hard for too long, possibly with some scary scars on my brain. Later, now, I start to think of it as just an acute end of a (rechargeable) battery. Just need to recharge. Like Now! No time for explanation; ‘Sorry, just leave me alone. Or..? I just cry’.

Strategic energy recharging. I was working a lot with strategic energy recharging in Toowoomba. In order to be able to be as social as possible with my work mates, I just needed to do strategic energy recharging now and then. Especially after the emo-crash I did a daily routine of afternoon alone time in my bed in my hotel room, sleeping, reading novels, listening to relaxing music and electronic chatting with friends. Because sometimes it is not a completely asocial time that I need. I just need less sensory inputs. Which is why I love e-chatting. This strategic energy recharging made it possible to work and socialize with my research colleagues for the most part of the day as well as rejoining them after my afternoon alone time for dinner. In a way this was a way for me to postpone the social hangover I got from being this overly social. Which I got and endured during my first week in Auckland. When I got the opportunity for being more on my own again.

Extrovert normativity. During several of those chats with a similarly introvert friend of mine, we started to talk about “extrovert normativity” including our own sense of internalized extrovert normativity. We’ve been talking earlier about our sense of shame and guilt when preferring to say no to social gatherings. Like there is a normal life, including certain social obligations, ‘everybody’ just have to do in order not to hurt anybody or being unpleasant and rude. And often these social obligations are along the degree of being boring but just something you do to be pleasant. While I prefer socializing with one friend in a calm environment, most group socializing is tiring. In the right group it may be tiring but pleasant, but in the wrong group it is only tiring (and boring).

Doing fun the extrovert way. When I travelled further to Auckland I happened to live as a lodger in an older lady’s home. She is an extrovert. Telling me almost immediately when we met – and while I was unpacking my things in her guest room which I was renting for five weeks – that a reason for her to rent out the room was her social interest (I suppose: fulfilling her social needs as an extrovert) in meeting interesting, successful professionals such as myself. Meeting her I started to think about the more cruel, but often unconscious, expressions of extrovert normativity. She finds it weird and keeps telling me so (not explicitly that she finds it weird, she says she worries about me), that I keep a lot to myself, focus on my writing, rather than being out and exploring. She gets satisfied or perhaps relieved when I report to her when coming home after a day of work that I have met up with research colleagues, or when I have done some kind of sightseeing. Like there is something I am missing, when I don’t do ‘fun’ in a particular, extrovert way. Perhaps not really doing what she thinks is part of being an interesting and successful professional.

Recharging the extrovert way (or ‘vacation’). Friends of mine have also expressed similar worries, stressing that I should take the opportunity during my travel to have ‘some fun’. But they also stress the importance of ‘taking some vacations’, in order not work too hard. Although these comments are well-meaning and loving, they are based on assumptions of what it is to have fun or what you need to do to recharge which aren’t compatible with me; my body and my mind.

It takes time for me to see this. And get to know what fun is for me. And what takes energy and what I need to do to recharge. Part of this process is to be aware of the workings of extrovert normativity in my life. Which tends to cloud my vision.

 

If you are interested in knowing more about my research, see

http://www.socw.umu.se/om-institutionen/personal/hanna-bertilsdotter-rosqvist

Don’t hesitate to email me if you want me to send you an electronic full-length version of a paper I’ve written that you take interest in.

A group of autistic self-advocates in Sweden which have inspired my thinking about autism a lot:

http://autistiskt-initiativ.se/

(website in Swedish but it is possible to google translate it to English if you look at it in Google chrome)

 

Related posts:

The Friendship Factor

Ethos – a well-respected psychological anthropology journal – has already established itself as a very reputable publication when it comes to the social study of autism. It had actually once devoted an entire issue to the topic; and that special issue has provided us, in my view, with some of the best works on the social reality of the condition to date.

Recently, Ethos has published yet another article on autism – this time by Elizabeth Fein from Duquesne University (currently open access). It’s always exciting when a social science study about autism gets published in a major journal, and I was very much looking forward to reading it. It’s been on my to-do list for several weeks now, waiting for me for to get round to it. And now that I finally have, I thought I’d share some of my impressions.

Questioning Answers does a thing in his (excellent) blog where he reads recent papers on autism from various disciplines (mostly biomedical if I’m not mistaken) and mediates the bottom lines of these studies to his readers. It strikes me that I’m too not badly placed to do something similar in my own blog, but with regards to publications on autism from anthropology, sociology, media studies and – as in this case – psychological anthropology.

At least I think this is the discipline from which Fein’s approach can be said to have emerged. Or is it cultural psychology? I have to admit that the line between them isn’t always particularly clear to me. Well, in Fein’s bio page, under the ‘expertise’ tab, she lists the following: clinical ethnography, cultural psychology, psychological and psychiatric anthropology, neurodevelopmental disorders, and science and technology studies. So basically wherever brain, mind and society cross paths, Fein seem to be on top of it. Now that’s already a pretty decent starting from which to talk about autism.

Let me start out by saying flat out that Fein’s article is really good. Like, really good. It’s got its few possible flaws, which I will get to in a minute, but these are negligible in relation to the usefulness and persuasiveness of her arguments. Basically, Fein offers us a way to think about autism while taking into account both its biological and social-structural components. And really, this is what any of us are trying to do, with varying levels of success. If you ask me, she nailed it.

So what is Fein arguing? It’s rather simple, really. She’s saying that the condition we refer to as autism is – at least in part – shaped at the interface between a person’s natural tendencies and their social environment. When the social environment, she says, is heavily structured around various exclusionary practices, a person with certain tendencies is more likely to eventually fall within the autism category.

In other words, according to Fine, a person might, for whatever reason, find it difficult to socialise with her peers at an early age. Now, if this difficulty is unmistakably debilitating, society refers to it as a clear-cut case of autism (given the fulfillment of a whole range of other conditions, of course). But sometimes, these difficulties are relatively subtle, and could potentially go either way.

Presumably, those would be the kids who a diagnostician would be reluctant to diagnose with autism at a very young age, and would suggest a few more years of observation.

So what Fein is saying is that in many of today’s Western societies, where social relationships are most often based on choice rather than obligation, social difficulties at an early age (even subtle ones) very often lead to exclusion and loneliness. The child’s peers, to put it bluntly, don’t want to play with her. They don’t want to be her friends. And nowhere in our system is it acceptable to make her peers play with her if they don’t want to.

This social exclusion, then, in turn, leads to the exacerbation of whatever difficulties were there to begin with. The child doesn’t get to experiment in socialising. The child suffers from bullying and cruelty. And the child doesn’t have relevant role models from which to learn socially desirable codes of language and behaviour (parents and teachers can’t be seen as relevant role models, as Fein demonstrates very well, because they don’t hail from the appropriate social milieu. For example, if a 10 year old child speaks exactly like his dad, his classmates are not likely to go nuts over him).

So take a person with subtle social difficulties, add two, five, or ten years of social solitude and an absence of relevant role models, and you get a person who by now easily qualifies as being on the autism spectrum.

Fein could be said to argue this: Society’s role in shaping autism goes well beyond framing, defining and diagnosing it. It also, by means of exclusionary practices, produces more autistic people than it used to.

Fein begins her article by using this claim as a way to reject two other claims. One claim she purports to reject is that the increase in prevalence rates is entirely biological and thus ‘real’. And the second claim she rejects is that the increasing rates have everything to do with definitions and diagnostic criteria and are thus ‘not real’. This was where I had my one main grievance with this paper; at its very onset, it builds a straw-man. And why is this a straw man? Two reasons.

First, very few researchers would disagree that the increase in autism rates is at least partly the result of social processes. They may seek out genes, pollutants, or pathogenic fungi, but they still see clearly that diagnostic criteria to autism have changed. The frequent question, then, is not whether the increase is real or not, but what proportion of the increase can be explained by this moving of the goal posts, and what proportion of it is in fact grounded in biology.

Second, there is something misleading about presenting this debate as being about the question of ‘reality’ to begin with. That there are more people labelled autistic nowadays than there have been three decades ago is a fact. One researcher might explain this fact in biological terms. Another might explain it in social-cultural terms. But it’s seldom the case that one explanation is seen to question the ‘reality’ of the other. Autism is no less ‘real’ because it was diagnosed using a more recent diagnostic manual with broadened criteria. Nor is it any more ‘real’ because some gene was identified.

At its very core – and Fein is absolutely aware of this – autism is both biological and social. I don’t see a reason to maintain some sort of dichotomy between those two inseparable components of it. Not even when this dichotomy is just used as a rhetorical instrument.

Going back to the main argument, Fein makes use of three different kinds of evidence when supporting her claim. First, theories in psychology and anthropology which emphasise the role of interpersonal relationships in developing social skills. This is pretty intuitive, in fact; it’s basically the idea that practice leads to skill. This is true for football, and it’s true for socialising.

Second, she draws on work from sociology which suggests that social relationships in some societies, including the US, have become increasingly choice-based. And this, to me, is a fascinating claim when put in this context. The literature Fein refers to compares modern-day societies to something like ‘friendship-economies’ or ‘identity markets’, whereby people can be said to be ‘friendship-worthy’ or not, based on all sorts of evaluation criteria. At the basis of such an economy is the belief that friendships are voluntaristic; that people should – and do – get to choose who they’re friends with. Basically we’re talking about a free market based on the principle of supply and demand. Similarly to the way a product’s value is determined by how much consumers are willing to pay for it; in a friendship economy, a person’s value as a friend is determined by whether or not people want to be friends with them. People are products; friendships are marketable.

You’re not seen as particularly good ‘friendship material’? You’re less likely to have any friends.

Finally, Fein draws on qualitative material generated from her own conversations and encounters with people on the autism spectrum. Now, this may be my bias as a social anthropologist, but these are always the data that speak to me the most. And Fein’s data speak clearly and powerfully.

If I had to mention just one fragment from this article which I’m likely to remember for a good long time, it’s the bit where her informant, who she calls Mara, tells her about the way she imagines her afterlife (Mara is deeply religious, we’re told). Mara’s vision of heaven is a frighteningly vivid representation of the difficulties she encounters in life:

“I would bring heaven down. Everyone would be having such a good time until I got there. So [I would be told]: you know, we understand you tried, but if you could just go sit outside and not bother people that would be great.” (p.93)

This heart clenching narrative is analysed very aptly by Fein: “Even in a space where inclusion is ostensibly governed by a moral logic of rights and wrongs”, she writes, “Mara imagines herself as the eternal exception to such rules. Neither laughing with the sinners nor crying with the saints, she is banished to a place of lonely liminality.” (p.93)

Mara paints a picture in which no matter what she does, no matter how hard she tries, she can’t seem to make friends. Even in a place governed by justice and love, she would still be excluded.

Lonely and friendless, Mara grows increasingly different from her peers, increasingly emotionally volatile, increasingly vulnerable, increasingly (as Fein would have it), autistic.

To me, this argument is convincing, though it does raise very important questions, which really have to do with the nature of the thing we call autism. Basically, if we accept Fein’s claim, then we are forced to imagine autism as being on the same spectrum as non-autism; we need to imagine a space where people can cross from one category to the other, following an accumulation of social experiences.

I’m sure some people would resist this construction. But I’m fairly ok with this.

The difficulty with this, however, is when we try and explain autism in light of this view in any way that’s not completely social constructivist. If some people can step in and out of autism, then how can we discuss it in any way other than as a social category, a culturally specific label, a historically contingent concept? If autism can be subclinical, to put it in still other words, then what is the nature of subclinical autism? Is it still autism in any sense of the word? Are we suggesting an idea of borderline autism, similar to the one they apparently have in South Korea (Grinker & Cho 2013)?

And if we’re suggesting that people can become autistic during their lifetime; are we also accepting that people can cease to be autistic? Because it seems to me we can’t avoid this implication.

The implications of Fein’s argument in political terms are massive, and potentially quite upsetting. The neurodiversity movements is structured, in many ways, around the view that autism is a naturally occurring form of difference. A form of neurodevelopmental diversity. When society is introduced as a significant factor – be it friendships, therapy sessions, or indeed parenting – this could potentially undermine much of their claim to equality and acceptance.

At the same time, there’s at least one very positive implication to Fein’s model, which I wholeheartedly accept. It places the responsibility for the life-prospects of people (autistic or otherwise) on society rather than on themselves. Too much current research – into the brain, into the DNA, into the psyche – regards the individual as the locus of ability and disability; the locus of giftedness or impairment; the locus of success and the locus of failure. We do need to pay more attention to the role of society – systems, structures, institutions – in shaping people’s life outcomes. Society’s role in affording success, and in determining failure. Fein’s approach allows us to do that when it comes to autism, and that’s just great.

 

References:

Fein, Elizabeth. 2015. “‘No One Has to Be Your Friend’: Asperger’s Syndrome and the Vicious Cycle of Social Disorder in Late Modern Identity Markets.” Ethos 43 (1): 82–107.

Grinker, Roy Richard, and Kyungjin Cho. 2013. “Border Children: Interpreting Autism Spectrum Disorder in South Korea.” Ethos 41 (1): 46–74.

 

Related Posts:

For the Love of Dogs: A Forthcoming Ethnography of Pet Dogs and Families of Children with Autism Spectrum Disorder

(In this latest addition to our series of guest posts by social scientists studying autism, it’s great to have Katrina Holland. Katrina is a postgraduate student of Anthropology at University College London. UCL is also where she completed her undergraduate study in Anthropology, focusing on human–dog relations in her undergraduate dissertation. Her forthcoming project is concerned with the role of pet dogs in families of children with ASD)

Autism made school and social life hard, but it made animals easy” (Grandin 2005, 1).

Anecdotal reports for the benefits of animal interaction for autistic individuals are plentiful and subjectively positive (notable examples include: The Horse Boy (Isaacson 2009); A Friend Like Henry (Gardner 2008); Songs of the Gorilla Nation (Prince-Hughes 2004), and Animals in Translation (Grandin and Johnson 2005), from which the above quote is taken). Recently, anthropologists have started to pay attention to the autism-animal connection in their work, with a notable emphasis placed on the attempt to better understand and conceptualise human sociality. I hope to build on this literature with my forthcoming research project, focusing on the role of pet dogs in families of children with Autism Spectrum Disorder. In this brief article I will introduce the topic of my research inquiry and share my research plans for the coming months.

When I am asked about what I’m currently working on, people often ask me: “Why the pet dog in particular?” or, “What about other pets?” Of course, many people, autistic and neurotypical alike, have a great affinity with a wide variety of animals, not only dogs. To the contrary of course, some people are self-proclaimed non animal-persons. For those autistic persons who do enjoy the company of dogs (and, yes, other animals too), however, these interactions present an opportunity to support their communication and expand ideas about culturally normative sociality to incorporate autistic ways of being social. Certainly, a great variety of animals have been proven to have wide-ranging psychological and physiological benefits for all kinds of human populations. Nevertheless, the dog earned the nickname “man’s best friend” for good reason: associated with the extensive period in which mankind and dog have lived alongside each other. Dogs were the very first thing to be domesticated by man, before any other animal or plant. For me, this is what makes the dog as a species so fascinating in the study of human–animal relations. Our tens of thousands of years spent co-evolving alongside one another has resulted in remarkably effective interspecies communication. For instance, in controlled tests the dog outperforms even our closest primate relative (phylogenetically speaking), the chimpanzee, at reading human communicative cues (see Hare and Tomasello 2005).

So, what does the dog have to do with autism? Increasing claims have been made for the potential benefits of canine encounters for autistic persons, following child psychiatrist Boris Levinson’s writings in the 1960s. Levinson (1962) reported how a child patient, who typically appeared “withdrawn” during psychotherapy sessions, responded in remarkable ways when Levinson’s dog “Jingles” happened to be present. The child even spoke to the dog: a great surprise to Levinson who had not been able to provoke speech during the previous month. This led Levinson to conclude that pets, such as dogs, can provide the autistic child with a level of connectedness that might not be present in their relationships with other people. When interacting with the dog, Levinson claims, the child establishes his own world in accordance with boundaries set by the child himself. This offers the therapist a chance to momentarily share in the child’s world where he feels safe and it is in these moments that the possibility for communication between child and therapist arises.

One implication of the animal connection is that individuals can learn about social behaviour through animals and then apply this to their interactions with humans. Exemplary of this argument – though not here in relation to dogs – is Dawn Prince-Hughes’ (2004) account of learning sociality from gorillas within a Seattle zoo, in which she reports of the success she has had from applying what she learnt from the gorillas to her human interactions.

Returning the focus to dogs, Olga Solomon (2012) has noted how human–dog interactions might allow the autistic child to recognise his/her capabilities to enjoy interactions with both animal and human others. Echoing Prince-Hughes’ experience with gorilla encounters, human–dog interactions present the individual with the opportunity to try out perhaps nonlinguistic but highly social actions in a safe space, free from the culturally normative constraints of social conventions. Solomon claims that interactions between therapy dog and autistic child challenge three common assumptions inherent in the dominant theories of sociality: the primacy afforded to verbal language and also theory of mind, and that sociality is a uniquely human way of being with other humans. On this basis, instead of thinking about sociality as an individual characteristic belonging to a person, Solomon suggests that it might be better considered as a property of particular environments. To this argument she claims that therapy dogs can act as “mediators” of sociality, increasing the opportunities for social coordination to occur.

That the dog should make such a good companion, especially for autistic children, is of course really rather intuitive. When interacting with dogs, humans need not depend on verbal language to understand basic dog behaviour, such as initiating play. Furthermore, dogs will not only initiate a bid for attention, but they insist on it. For instance, they may bring a ball to a child, then, if ignored, push it closer to the child, bark, or otherwise demand a response. No verbal language or understanding of more complex human-human interaction is required.

While anthropologists have as yet limited their interest to trained assistance and therapy dogs, my research will focus on the more typical experience of families with pet dogs. During this summer, I will be spending time with several families in southern England. The two things these families have in common are their child’s ASD diagnosis and their pet dog(s). By spending time in family homes, observing daily engagements between the humans and dogs, as well as joining the family on outings such as dog walks, I hope to address the role of the dog in the particular context of autism in everyday family life. Specifically this will involve a consideration for whether the dog takes on an additional, or altogether different, role for the autistic child as non-human caregiver. To this end I will engage with ideas concerning the distinctions between human and animal and observe how these are expressed in everyday life. More broadly however, I intend to produce an ethnography that attempts to grasp an understanding of the possible ways of being in the world that are made possible at the intersection of autism and pet dogs in the everyday family environment.

Works cited

Gardner, N. 2008. A friend like Henry. London: Hodder & Stoughton.

Grandin, T., and Johnson, C. 2005. Animals in Translation: Using the Mysteries of Autism to Decode Animal Behavior. New York: Scribner.

Hare, B. and Tomasello, M. 2005. ‘Human-like social skills in dogs?’ Trends in Cognitive Sciences, Vol. 9, 439–444.

Isaacson, R. 2009. The horse boy. New York: Little, Brown and Company.

Levinson, B. M. 1962. ‘The dog as a “co-therapist.”’. Mental Hygiene, Vol. 46, 59–65.

Prince-Hughes, D. 2004. Songs of the Gorilla Nation: My Journey Through Autism. New York: Three Rivers Press.

Solomon, O. 2012. ‘Doing, being and becoming: The sociality of children with autism in activities with therapy dogs and other people’ Cambridge Anthropology, Vol. 30 (1), 109-126.

 

Related posts:

Autism in History

(In this new guest post in The Autism Anthropologist, it’s a real pleasure to have Bonnie Evans. Bonnie is a Wellcome Trust Postdoctoral Fellow at Queen Mary, University of London. She is currently conducting a project entitled “Neuroscience, Psychology and Education: Autism in the UK 1959-2014.” She is interested in the development of psychology, psychoanalysis, psychiatry, and related neurosciences in the twentieth and twenty-first centuries. She completed her Ph.D. at the Department of History and Philosophy of Science, Cambridge University, in 2010 on the origins of child psychiatry and childhood schizophrenia research and its influence on contemporary theories of autism. After completing her Ph.D., she worked as a postdoctoral researcher at King’s College, London’s Centre for Medical Humanities. Her first monograph, The Origins of Autism, is contracted with Manchester University Press and is due out later this year.)

I never set out to write about autism.  My interest in the history of psychology and the human sciences directed me towards this subject and compelled me to reflect on the meaning of autism and its changes over time.  It was whilst searching through back copies of child psychology journals, and examining case studies of children admitted to institutional care from the 1930s to the 1970s, during my PhD research, that I realised the importance of autism, as a diagnostic category and a descriptive concept, to shaping theories of child development in Britain and the USA, and now I am totally hooked on the topic.  Autism has been central to child psychology since its establishment as a discipline in the early 20th century, yet the story is not always told this way.

A recent article that I wrote for the History of the Human Sciences examined how the meaning of autism changed dramatically in the 1960s and 1970s in the Anglo-American world, and the significance of this to understanding today’s ideas about autism.  Whereas pre-1960s autism presumed excessive imagination, fantasies and hallucination in subjects so defined, post-1960s autism highlighted the lack of imagination, fantasies and hallucination in autistic thought.  This has altered how societies have come to think about child development, and its differences, its atypicalities.[1]

I’m not always in an archive. My work in the education sector has brought me into contact with far too many interesting children and adults – some with a diagnosis of autism – for me not to challenge hackneyed beliefs about human types.  I am fascinated with the neurodiversity movement and the way that it makes psychologists, psychiatrists, policy-makers, and others rethink and re-examine their training and their beliefs. This is a good thing.

My current project explores autism, education and neuroscience as these things have developed in Britain since the 1960s.   Another recent article that I wrote in the Bulletin of the History of Medicine explored how the 1959 Mental Health Act forced legal changes concerning the rights of children classed with ‘mental defect’ to an education forced bureaucrats, psychiatrists and psychologists to re-think the way that children were assessed, classified and taught as part of the education system.  It also forced changes in the organization of hospital care for children, which have helped to frame contemporary understandings of autism.[2]

After the 1959 Mental health Act, researchers at the Institute of Psychiatry, London, in particular, have worked with government departments to bring about changes in the way that children with all kinds of special educational needs are assessed and taught, eventually leading up to the 1981 Education Act (1983). The 1981 Act introduced Statements of Special Educational Need into schools, only recently replaced by Education Health and Care Plans.  These legal milestones have been fundamental in establishing, shaping and defining the autism category, and its political clout in the UK.  The 2009 Autism Act is the reflection of a complex history of attempts to establish autism as a category that is recognized in law, a battle that was not easily won.  My book, coming out soon with Manchester University Press, will cover this history, along with a discussion of autism in relation to wider theories of child development.

There are far too many clichés in the way that the history of autism is often told in the press and elsewhere, which can lead to inaccuracies.  This is particularly important in relation to discussions of recent increased rates of autism, because historical knowledge is vital in detecting how much of the increase is due to changes in the application of diagnostic categories.  There is now some really interesting sociological and historical work on the autism epidemic, notably Gil Eyal’s book, The Autism Matrix.[3]  Other sociological, historical and literary scholarship has opened up new ground in ways to think about autism.[4]

Since the early 20th century, autism has been an important concept with which to think about human development.  Today’s autism, as a diagnostic category, as a legal term, as a self-identifier, as a descriptive concept, is no less complex than earlier definitions. What has definitely changed is that more people are thinking, talking and writing about it.

 

[1] B. Evans, “How Autism Became Autism: The Radical Transformation of a Central Concept of Child Development in Britain,” Hist Human Sci 26, no. 3 (2013). http://hhs.sagepub.com/content/26/3/3

[2]B. Evans, “The Foundations of Autism: The Law Concerning Psychotic, Schizophrenic, and Autistic Children in 1950s and 1960s Britain,” Bull Hist Med 88, no. 2 (2014). http://muse.jhu.edu/journals/bulletin_of_the_history_of_medicine/v088/88.2.evans.html

[3] Gil Eyal et al., The Autism Matrix (Cambridge: Polity, 2010).

[4] E.g. Chloe Silverman, Understanding Autism : Parents, Doctors, and the History of a Disorder (Princeton, N.J. ; Woodstock: Princeton University Press, 2011); I. Hacking, “Autism Fiction: A Mirror of an Internet Decade?,” University of Toronto Quarterly 79, no. 2 (2010); Stuart Murray, Representing Autism : Culture, Narrative, Fascination (Liverpool: Liverpool University Press, 2008); Majia Holmer Nadesan, Constructing Autism (London: Routledge, 2005).

 

List of References:

Evans, B. “How Autism Became Autism: The Radical Transformation of a Central Concept of Child Development in Britain.” Hist Human Sci 26, no. 3 (2013): 3-31.

Evans, B. “The Foundations of Autism: The Law Concerning Psychotic, Schizophrenic, and Autistic Children in 1950s and 1960s Britain.” Bull Hist Med 88, no. 2 (2014): 253-85.

Eyal, Gil, B Hart, E Onculer, N Oren and N Rossi. The Autism Matrix. Cambridge: Polity, 2010.

Hacking, I. “Autism Fiction: A Mirror of an Internet Decade?” University of Toronto Quarterly 79, no. 2 (2010): 632-655.

Murray, Stuart. Representing Autism : Culture, Narrative, Fascination. Liverpool: Liverpool University Press, 2008.

Nadesan, Majia Holmer. Constructing Autism. London: Routledge, 2005.

Silverman, Chloe. Understanding Autism : Parents, Doctors, and the History of a Disorder. Princeton, N.J. ; Woodstock: Princeton University Press, 2011.

 

 Related Posts:

 

Thoughts on Awkward

Every language has those words, and plenty of them, that can’t really be reduced to their translations or dictionary definitions. To be fair, that’s the case with most words. Meanings derive from context; from the intentions of the speaker and from the connotations they raise in the listener.

Words have specific histories. Sometimes their meanings depend on the intonations in which they are used, or from the body language or facial expressions that accompany them. Sometimes words can even mean two exactly opposite things. ‘Cleave’ is the classic example in English, but even think of the word ‘love’: ‘I love Lisa’, means one thing. Now think of the same utterance spoken with eyes rolled: ‘Yeah, I love Lisa’; which effectively means that my feelings towards Lisa are less than positive.

Don’t you just love these sorts of ambiguities?

Anyway, in context, most words always mean more (or less) than their dictionary definitions would let on. Which is what makes them so interesting and valuable. And the best of these are basically like really good clues, to put it simply, about what matters to a given set of people, what drives them, how they see the world.

So anthropologists trying to make sense of a society or culture different than their own often choose such words to focus on. A great recent example is found in Gabriella Coleman’s fantastic book on hacker culture – Hacker, hoaxer, Whistleblower, Spy – where she devotes a lot of much deserved attention to the concept of lulz. What are the lulz? Well I could try and explain, but I would be doing it an injustice. Coleman uses dozens of pages to explain the concept of lulz, and she does this for a reason; the word means much more than any simple sentence or paragraph could convey. And in meaning as much as it does, it teaches us a great deal about the people using it.

In other words, if you’re gonna try and understand what motivates Anonymous, for example, you need to first appreciate, in a very nuanced way, the meaning of the concept of the lulz.

Another great example of such a deep engagement with a single word or phrase is from this lecture by anthropologist Michael Wesch, where he presents the audience with ‘a brief history of whatever’. ‘Whatever’ is not merely an extremely common – and therefore meaningful – word, but its shifting meanings can also be used as a metaphor for the process of shifting sensibilities among young Americans over the past couple of generations. And it’s a great lecture anyway, so give it a look.

Or not. Whatever.

So anyway, there’s at least one such word in the English vocabulary whose story has not yet been told (well, as far as I know, anyway). A word that’s not quite definable, not quite translatable, and at the same time extremely common and meaningful. A word that if I could get my head around it, I feel, I could claim to know a bit more about the people who use it. A word that is just familiar enough to me that I can use it myself in a way that may seem natural; but that is at the same time just foreign enough that when I’m using it I always feel like I’m experimenting just a little bit.

Like someone is likely jump out from behind a plant or something and say “nope, sorry, you’re using it wrong’.

And wouldn’t that be awkward.

Awkward. So many people use this word, in oh so many contexts. But what does it mean? What do they mean?

My initial intention in this post was to produce, similar to Wesch, a brief history of ‘awkward’. But this would take more time and resources than I can currently invest. So instead, I just thought I’d lay out some thoughts about this concept, in a very unsystematic way. Basically what I’m wondering is what motivations, sensibilities, imaginations, concerns and values are in action when someone describes something or someone (or crucially, themselves) as awkward?

Dictionary.com defines it as any one of the follows: lacking skill or dexterity; lacking grace or ease in movement; lacking social graces or manners; hard to deal with; difficult; requiring skill, tact, or the like; and finally, embarrassing or inconvenient; caused by lack of social grace.

I know I know, nothing is more of a cliché than spicing an article with a dictionary definition. I can’t believe I just did that. Jesus. How awkward.

So anyway, according to the dictionary, awkward means either a lack, or the consequence of a lack. Meh. Come on. It has to mean more than that doesn’t it?

I think any one of these definitions tells a partial story at best. Not every lack of skill is seen as awkward. Not even every embarrassment or inconvenience caused by a lack of social skill is considered awkward either. When ‘awkward’ is uttered, an affect is invoked that goes beyond, I think, embarrassment or discomfort, or at the very least denotes a very specific incidence of those.

Urban Dictionary already tells a slightly different story. Not constrained to the formal rules of dictionary definitions (whatever those may be), this user-generated source often provides more intuitive and immediate definitions that somehow manage to capture not only the meaning of a word, but also its essence; its spirit, if you will. 2235 users ‘liked’ the following definition of awkward (as opposed to 417 who took the trouble to actively ‘dislike’ it): “passing a homeless person on your way to a coin star machine.”

I love this definition (no rolling of the eyes needed), because it somehow represents that ineffable nature of awkwardness; it’s not necessarily a ‘lack’ of anything, nor the result of such a lack. It’s just what sometimes happens between people when certain situations occur. Oh and confusingly, it’s also the situations themselves. So passing a homeless person while holding a bucket of change is awkward. And the feeling you get when this happens is awkward. And the look he gives you is awkward. And you’re a pretty awkward person, anyway.

Most people hate awkward moments. But others seem to relish in them. Some are oblivious to them. Some are hypersensitive to them. But whatever their affinity toward them, a lot of people seem to describe so many of their experiences, as well as events and people, as being awkward.

How did awkward become such a common phrase? Well, I just checked it on Ngram, and it turns out that awkward isn’t really any more common than it used to be, at least in terms of how many times it appears in books. But I think I can explain it in one of two ways (or both). First, awkward in the sense of weird, unexpected or uncomfortable isn’t new at all, and has been around for ages. At the same time, ‘awkward’ in what I suspect, at least, is a rather recent usage (as in meaning that social awkwardness of embarrassingly not knowing what to say), would not necessarily find its way into so many book. Or maybe I’m just wrong and this meaning is just not recent at all. I don’t know.

<https://books.google.com/ngrams/interactive_chart?content=awkward&year_start=1800&year_end=2000&corpus=15&smoothing=3&share=&direct_url=t1%3B%2Cawkward%3B%2Cc0>

So why do we say awkward so much? And if it’s such an important word, why doesn’t it exist in Hebrew, for example?

As per the first question, I guess it all comes does to that feeling many of us share of wanting to always be in sync, socially speaking. Always wanting to know the right thing to say. Always wanting to be told what we expect to hear. Always wanting to have a grasp of the situation. And when those expectations aren’t met, like when social rules are broken, or when we’re at a loss for words, a certain kind of feeling ensues. A feeling of powerlessness; of confusion or anxiety. And at that moment, everything sort of feels like it’s falling apart. Not only our composure (“It just felt awkward”), or the interaction itself (“we just had a really awkward conversation”) but our whole selves (“I can’t believe how awkward I was”), as well as the person in front of us (“and she was awkward too, by the way”).

Until eventually nothing makes sense any more, and everything just turns into a big pile of awkwardness (“I dunno, everything just turned into a big pile of awkwardness”).

There’s really no reason to think this feeling is in any way new. And while I do suspect it’s slightly more common in some cultural contexts than others, I don’t see why it should be more common in English speaking countries than in Israel, for example. So what’s going on? Why is it still so popular in English, yet non-existent in at least one other language (and probably many more)?

I think the explanation would have something to do not with the existence of the feeling itself, but with the attention given to it. What is unique in the word ‘awkward’ is not the fact that it describes a certain experience; but that it turns it, very consciously and deliberately, into an on object of reflection. Basically, it allows us to talk about the feeling at length. To tell stories about it. To delve into it.

In other words, English speakers have been going through a process of fetishizing this uncomfortable experience now known as awkwardness. Searching for ‘awkward’ on google bring up the following results (I’m not including results from online dictionaries): A TV series actually named Awkward. A YouTube video entitled 18 Awkward Hairstyles That’ll Make You Smile. A radio program about Six awkward moments at Jay Z’s Tidal relaunch. A photo blog post entitled The most awkward hover hands in awkward dude history, and a website called Awkward Family Photos.

I see a pattern here. Do you? Awkward has become a form of entertainment.

Certain TV shows have made noting socially awkward moments into an art form. Seinfeld is a classic example. But as much as its creators relished the humour in those moments, it was Larry David’s later project, Curb Your Enthusiasm, that really sunk its teeth into them. Some scenes in Curb literally make me cringe with discomfort. This happens especially when Larry David’s character disregards all the rules of appropriate social conduct. He knew this would have this effect, of course. That is what he was going for. And yet I love this show. As he hoped people would.

Awkwardness is mesmerising. It is entertaining. It is also, currently, marketable. We just can’t get enough.

So where does this take us? I’m not sure, to be honest. Maybe us English speakers have gotten so used to thinking deliberately and explicitly about the nuances of social interaction; while at the same time growing ever more sensitive to failures in that regard; that the concept of awkward just emerged to the A-List of popular words as a result.

And as always, between and betwixt emerging lay sensibilities, cowers the anthropologist in pursuit of even the vaguest of valuable propositions. I dunno. Whatever. God that’s awkward.

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.

How many participants have you got?

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

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

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

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

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

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

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

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

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

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

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

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Anti-Psychiatry and the Neurodiversity Movement

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

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

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

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

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

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

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

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

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

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

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

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Going Native

A once common ethos in social anthropology has been to “go native”, namely, to try one’s best to adopt the habits, norms and lifestyles – and even the values and beliefs to the extent that it is possible – of the people one studies. While “going native” is still often regarded as a prerequisite of good ethnographic work, this trope has since been problematized in a great many ways, and its meaning has gradually changed.

Primarily, it has been noted that the anthropologist – like any other person – always carries with him/her their own social and cultural baggage, and so despite their very best efforts, that baggage is always and inevitably going to shape their understanding of a particular cultural system, phenomenon, or event. In other words, one can never entirely ‘go native’.

But although this goal of going native is clearly unattainable, the anthropologist is still expected to give it their best shot. For instance, if everyone in the village is going fishing, the anthropologist needs to get on a boat with the rest of them. If people around are fasting to commemorate a historical event, the anthropologist should do likewise. And if the general belief is that ancestral spirits cause disease, the anthropologist, upon falling ill, might be wise to consult a local healer as to what the cause of his/her specific ailment may be.

The idea is that while the great distance between people from different places and backgrounds can never be completely erased – or in other words, truly ‘becoming native’ isn’t possible – this distance can certainly be bridged to some extent. That’s what social anthropology is all about, after all. And to bridge this distance, one must actively seek ways to come to appreciate the experiences and perspectives of those one wishes to understand. If not to become them, then at least to pretend to become them for long enough to get an insight into their motivations and reason.

This issue has haunted me for some time as I was doing my fieldwork. Because while cultural traits can perhaps be partly acquired through learning a language, studying texts, engaging in specific kinds of labour, or assuming a particular social role in the community, my study does not focus on cultural differences. My study focuses on neurological differences. So what do I do? How can anyone participate in ‘being autistic?’, if they’ve not been born with that particular neurological variance? How does one adopt a form of difference, when that form of difference is embedded in the brain?

The short answer is “you can’t”, but I don’t think this matter should be resolved quite this quickly.

In my post about the film Playtime, I discussed my experience of watching the film as instrumental in my understanding of what being autistic might be like: the irritation by noise; the disorientation; the confusion; and the frequent sense of inconsistency and incoherence. It demonstrated that it was possible for a NT to perhaps get a glimpse into a neurodiverse experience.

So I began to pay more attention to these and similar sensations in my own everyday life. Take noise, for example. I used to find it very easy to block out background noises. It’s a question of attention, after all, and I simply focused mine on the sounds that were relevant. Gradually, however, while I was doing my fieldwork, I began to consciously shift my attention outwards, and effectively force myself to absorb more and more sounds from the environment; the traffic, the fridge, falling rain, anything. Gradually the world – my world – had become a rather noisy place, at least as long as I was paying attention to it. But fascinatingly, what started as an exercise, has become rather permanent – I have trained myself to become more sensitive to auditory stimuli.

The other day I was sitting in a busy restaurant in nice company, and I found it extremely difficult to concentrate on the conversation. The loud music and the constant chatter impressed so heavily on me, that I began to develop a headache. Moreover, distracted by all the noise, I couldn’t articulate myself as well as I wanted to. After a while, the loud sounds were all I could hear.

Mind you, I’m not saying “this is what being autistic feels like”. I have talked to enough autistic people to know that there is much, much more to it than this. And anyway, I doubt my auditory experience was even nearly as uncomfortable as it can be for so many people out there. Not even close, as far as I can tell.

But it’s a window, you know?

Because here is where this small discomfort led to a rather significant insight: what can I do about the fact that the noise is making me uncomfortable, ineloquent, and slightly ill? Should I excuse myself and step outside (not a huge improvement, as I have also become more sensitized to the heat and air pollution)? Should I try and share my discomfort and apologize, which may result in my being stigmatized in unexpected ways? Should I suggest that we speed up our lunch and go find some place quieter? None of these options is ideal, and each would involve some breach of social etiquette. I was trapped.

Let me be clear: I wasn’t suffering. Mostly, I was enjoying myself. It would be inexcusable of me to claim that I understood what being autistic was like at that moment. However, I could also imagine it being ten times worse. And I could imagine finding it that much more difficult to navigate the social dimensions of this event. And I could imagine the stress, even panic, of trying to assess how each of my possible choices would turn out.

No, I wasn’t “becoming native”, but I did manage to briefly pretend that I was, if only for the sake of my own education.

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How to Visualise Autism?

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

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

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

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

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

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

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

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

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

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

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

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

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

Any ideas?

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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?

 

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The Horse Boy

The Horse Boy

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

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

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

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

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

horseboy

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

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

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

*

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

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

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

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

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

 

What do you make of all of this?

 

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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.

playtime

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.

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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?

 

 

 

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.

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