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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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Lars and the Real Girl

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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