Tag Archives: Autism in India

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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My Name is Khan

My Name is Khan

Rizvan Khan grows up in a Mumbai neighborhood – possibly a slum. He is different from the other children; he takes things way too literally; loud noises and big crowds make him anxious; he dislikes being hugged, and gets upset by the color yellow (is a disliking of one specific color in any way common among autistics? I personally have never heard of this). He’s bullied at school, but his genius for mechanics earns him a respectable role in his community. His mannerisms are typical – perhaps stereotypical – of an autistic boy. But there is no real surprise there, or any room to wonder; we were already told by the movie’s opening captions that “The protagonist in the film suffers from Asperger’s syndrome, a form of autism.” And are further informed that “While the film endeavours to depict the character as authentically and sensitively as possible, it is a work of fiction and hence certain creative liberties have been taken in the portrayal of the condition.”

What an interesting statement. Why was it put there? Is it meant to appease those who might be offended by the inaccurate representation of autism in the film? Is it meant to forewarn the viewer no to take its portrayal of autism at face-value, lest he/she regards this as a project meant to educate, rather than entertain? Were the lessons from ‘Rain Man’ learnt – with its huge but unjustified effect on the understanding of autism in the English speaking world? Whatever the reason, I appreciated the film makers’ effort to qualify their depiction of autism as not-necessarily-accurate; after all, no depiction of autism in film can ever be 100% accurate (nor, for that matter, any depiction of anything else), so best to be aware of that fact, rather than to recklessly assume the role of educator.

As Rizvan reaches adulthood and moves to the US, he is diagnosed with Asperger’s syndrome by his sister-in-law, Hassina. “She was from Brooklyn, New York City”, he tells us. “She taught psychology in the university here.  She was the first to find out that I had Asperger’s syndrome. My fear of new places, new people. My hatred for the colour yellow and sharp sounds. The reason for me being so different from everyone was defined in just two words: Asperger’s syndrome.” Quite beautifully put, don’t you think?

My-Name-Is-Khan_4

Rizvan falls in love with a woman, who he then marries. Later, following a terrible tragedy, he goes on the road, getting involved in all sorts of Forrest-Gump-like adventures, till the eventual and predictable happy ending, when he (spoiler alert) meets the president of the United States. Realism was never intended by the film’s makers. Over-acting and an inclination to melodramatic over-the-top-ness are hallmarks of Indian cinema, and My Name is Khan is no exception. But having said that, I did really enjoy the movie. I sympathized with and rooted for Rizvan, and I completely ‘got’ his love for the beautiful Mandira. I cried my eyes out in the sad bits, jollily danced my head during the Indian musical montages, and laughed at the good natured Bollywood allusions. All in all, I thought My Name is Khan was very good. And it raised some extremely interesting issues.

My Name is Khan is very clearly a story about difference. But the type of difference that is discussed is not so straightforwardly laid out. Initially, we are led to believe that the film deals with a neurological difference; an autistic boy growing up in a neurotypical environment (as is usually the case); treated with cruelty by his peers, but loved and understood by his mother: “No doctor could ever tell her why I was the way I was” he narrates; “But Amni… she never felt the need to know why. I don’t know how, but she found a way to know me”.

But then the plot unexpectedly turns to focus on a quite different sort of difference; riots break out in Mumbai between Muslims and Hindus. Ethnic and religious rivalry becomes the focus of the story.

As a boy, Rizvan, a Muslim, repeats to his mother some random violent rant against Hindus that he over-heard in the street. Amni, outraged, explains to him in a way she knows he will understand: Muslims and Hindus are exactly the same. People are only different insofar as they are either good or bad; that is the only difference that exists.

But if that’s the case, what can be said about Rizvan’s own way of being different? It seems to be implied that it is as insignificant as ethnic or religious differences. But is that really true?

The immediate implication of this message is obviously positive; it is that differences don’t matter, we are all the same; we are all equal. We should thus accept one another, love one another, and judge each other based on actions – namely what one does; rather than on properties – namely what one is (anyone finds this reminiscent of yet another Forrest Gump motif? “My mama always said”, Gump kept repeating, “stupid is stupid does”). This is a peaceful message of tolerance. But there is another side to this. In asserting that people are all the same, and by implicitly comparing ethnic differences with neurological differences, Amni ignores an important fact – that Rizvan’s way of being different is, well, different. It is not grounded in beliefs, traditions, texts, language, ancestry, or places of worship. It is not even grounded in the body, as is sometimes the case (from henna dyed hair through circumcision to skin color). Instead, the difference between Rizvan and his peers is grounded in their respective brains; in their minds; in – some would say – the very thing that makes them human to begin with.

In other words, we could regard ethnic or religious differences – as well as nationality or gender – as mere add-ons, under which we are all essentially the same. But when neurological differences are thought of in the same way, this poses some difficulties. Autism involves a different wiring of the brain, a different mechanism of cognitive process; so if autism is also such an add-on, what is underneath it? Is there an underneath? Because if there isn’t (it’s just turtles all the way down…), can autistic people really be said to be the same as neurotypicals? What would be the nature of this sameness?

The view that autistic people and neurotypical people are essentially the same is obviously good-intentioned, but it’s inaccurate. Primarily, it relies on the assumption that in order to achieve equality and acceptance, we first need to establish sameness. That’s not necessarily so. Equality and acceptance can be similarly achieved by simply acknowledging the fact that people are different;  that this difference is not necessarily at the surface level, but at the very core of what makes us human; that this difference in no way implies the superiority of some over others, or dehumanizes certain groups; quite the opposite. It implies that there is more than one way to be human. It implies that in order to achieve personhood, one does not need to first establish similarity to the normal or the typical. One does not need to change their ways, to mimic, or pretend. One can be divergent, even radically so, and still be just as bit as human as someone who is the very definition of typicality.

Kristin Bumiller wrote about this in her 2008 article entitled ‘Quirky Citizens:  Autism, Gender, and Reimagining Disability’. She believes that autism advocacy, and the neurodiversity movement in particular, has much more to offer society than ‘just’ promoting acceptance of autistic people (crucial in itself). “In their quirkiness”, she writes, “[autistic people] contribute to a culture of citizenship that fosters equality without sameness.” Neurodiversity fosters citizenship based not on sameness nor on difference (because both imply the existence of a benchmark norm), but on inclusion and acceptance; on individual roles and contributions. “Although neurodiversity is most important to people who identify as being on the spectrum,” she later adds, “it also has the potential to enrich society and change how we understand ourselves and other people.” (2008:982)

And how grandiosely was this potential realized by the protagonist of My Name is Khan, whose life-course is continuously affected by politics of differences. His brother rejects his Hindu wife. “You cannot marry her, it’s Haram!” he says. “She is a Hindu. There a lot of differences between them and us, understood?” to which Rizvan replies, “No, there’s no difference.  Good people, bad people. There’s no other difference.” The 9/11 attacks on the World Trade Centre lead to a wave of hatred in the US; particularly towards Muslims, but anyone with a brown skin is suspect. His step son is killed in a racist attack. His wife sends him away, blaming his ethnicity for her son’s death. On his wanderings, he is the target of suspicion, fear, and ridicule, due to either his skin color, his creed, his autism – or all of these combined. His donation to a fund raiser is denied, as it is an event “for Christians only”. “Honey, keep it,” he tells the receptionist, “for those who are not Christians in Africa”. He is lodged by a kind Georgian Black woman and her young son, whose older brother has recently died in the war in Iraq. In a memorial service in the village chapel, he is asked to say a eulogy for his step son. To recap: in a Southern US state, In a Christian Church, in a village populated by African-Americans who bereave the death of their sons in Iraq, the Muslim Khan eulogizes, in Hindi, his son, a Hindu, who was killed by white Americans because of him having a Muslim last name. Get the picture?

Differences are omnipresent in My Name is Khan, and the protagonist is, we are made to believe, in the very best of positions to rise above these differences (without being oblivious to them, however, as one might think), and bring people of all colors and creeds together. To help each other out. To wear their cultural identities with pride, and to stand up against bigotry, prejudice and xenophobia.

In embodying a type of difference that in a way eclipses all other differences, Rizvan imagines a society where differences are respected, and where people are judged according to deeds rather than lineage, skin tone, or religious beliefs. To what extent does this tell a story of autistic people in general? Or even about autism itself, as a social category? I’m looking forward to hearing your thoughts on this. Please comment and share hits blog with others who might be interested.

And why not end with this lovely quote:

“The Book Different Minds says that people like us can’t express their emotions in words but we can write them easily. I can fill thousands of pages, millions of times with ‘I love you Mandira’. But not once could I say it to you. Perhaps that’s why you are angry with me … meanwhile whenever I have time, I will write all that I couldn’t say to you. And then, you will love me again. Insha’Allah.”

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