Tag Archives: Anthropology

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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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.

 

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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.

 

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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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