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.

 

Related Posts:

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:

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.

 

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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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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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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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