Autism in Brazil and Italy: Two Cases From the June 2015 Special Issue

Posted by jknopes

Our July 2015 entries on the blog highlighted individual articles from our latest release, the June 2015 Special Issue on the conceptualization of autism (which you can access here.) These articles, focused centrally on anthropological and ethnographic accounts of autism across the world, explore contemporary issues surrounding identity, subjectivity, citizenship, biosociality, neurodiversity, and disability. In this week’s installment, we visit two more articles from the issue to investigate concepts of autism and its treatment in two countries: Brazil and Italy.

Autism in Italy: Rigidity and the Culture of Therapy

Read the full article by M. Ariel Cascio here: http://link.springer.com/article/10.1007/s11013-015-9439-6

In Italy, therapy and educational professionals who work with young adults with autism (ages 14-34) note that autism is often marked by a desire for intense social structure and timeliness: what they describe as “rigidity” or “rigid mind.” While the desire for structure is considered a core feature of the autism diagnosis across the world, Italian professionals who serve in community-based therapy, day centers, and residential homes for people with autism nevertheless have a complex relationship with “rigidity” as a mechanism for treatment.

Cascio interviewed both staff members at centers and programs for young people with autism as well as mental health and social service professionals throughout the region who worked on autism across the life course. These professionals voiced the value in creating structure for people with autism to assist in their development of improved social skills. Therapeutic centers and programs are themselves operated within an institutional structure that facilitates organized social interactions, both between their clients with autism and amongst staff members. However, professionals who worked at these programs often felt stymied by expectations from parents and their peers who wished for children with autism to adhere to a particular therapeutic regimen, diet, or activity schedule. The professionals likewise cautioned one another that taking any staunch, singular, and indeed “rigid” route to therapeutic intervention could prove counterintuitive to helping people with autism develop new social skills. Professionals embraced the idea of providing structure while, simultaneously, seeking to blend behavioral therapies to match individual client needs, as well as to create opportunities for clients to engage in valuable, less structured social activity.

These concerns about rigidity in the treatment of autism arrive at a time when older social structures for the care of neurodiverse individuals have been disassembled. In the 1970s, new social movements led to the deinstitutionalization of mental hospitals and care facilities, replacing the separation of mentally ill and neurodiverse individuals with integration policies that mandated new employment opportunities and equal-opportunity education for the developmentally disabled. Local mental health services attached to the national health care system provide psychiatric, behavioral, and therapeutic services that accompany other integration policies. This state of flux, at the societal level, refutes the notion that social services for autism must remain “rigid” and immmovable: they, too, change and develop with time given broader changes in the resources and services made available by the state to the disabled.

The Italian case presents a unique perspective on both the relationship between care professionals and the nature of diagnosis and treatment, as well as between concepts of autism at the scale of individual treatment and at the level of the state and national systems of health care. Like the discussion on Brazil, Italy similarly provides a fascinating context for the study of autism as a condition that is diagnosed globally, yet treated and conceptualized locally.

Autism in Brazil: Diagnosis, Identity, and Treatment Models

Read the full article by Clarice Rios and Barbara Costa Andrada here: http://link.springer.com/article/10.1007/s11013-015-9448-5

Brazil’s model for delivering social services to the developmentally disabled was directly modeled after the Italian system of deinstitutionalization and social integration of the mentally ill and neurodiverse. Treatment interventions for people with autism, however, were not included in Brazilian social services until the early 2000s, when adolescent and child mental health conditions were integrated into existing mental health systems. This shift increased programming for people with autism, however concerns accompanied this new system about the nature of diagnosis and treatment, as expressed differently by mental health professionals and the parents of children with autism.

Rather than viewing autism as an integral piece of an individual’s identity, Brazilian mental health professionals instead employ a social model of disability that stresses the environment that a person with autism exists within. Therapies emphasize social inclusion and bolstering all mental health clients’ sense of autonomy, so as to combat the exclusion and institutionalization of the individual. This model did not emphasize treatment plans specific to autism, but rather sought to improve the lives of all clients with mental disabilities. Mental health professionals voiced concerns about creating autism-specific services, saying that these programs would exclude people with other forms of mental disability from seeking appropriate care (and exclude people with autism from engagement with people of other mental disabilities.)

Parent activists who have children with autism, on the other hand, take an identity-based approach to championing the rights of people with autism. They argued that by underscoring the specific nature of autism as a mental disability, and providing services tailored to the treatment of autism, their children would be better prepared for social inclusion. Parents feared under-diagnosis of the condition, which would mean that their children– failing to have a certified diagnosis by a health professional– would be unable to seek out care resources and early intervention programs to improve behavioral and social outcomes.

In both instances, the authors stress that the dichotomy between medical and social models of disability is scarcely stable when examining autism in Brazil. Mental health professionals and parents of children with autism both grasp the importance of medical certification of autism (diagnosis) as a means to access services (that are aligned with the social model of illness.) However, parents and professionals disagree on the nature of these services; parents hold that social inclusion for people with autism requires an understanding of their difference from non-autistic people, while professionals strive to avoid employing specific diagnosis categories as a means to separate the kind of care and services they deliver to clients with other mental health conditions.

The Brazilian case thus highlights the nature of autism and mental disability as both a medical and a social condition: one that must be negotiated, treated, and diagnosed in light of its manifold implications for human health, development, and social life.

Special Issue Highlight: The Anthropology of Autism, Part 2

Posted by jknopes

In this week’s entry, we continue our issue highlight on the current special issue of Culture, Medicine & Psychiatry. Released in June 2015, the latest issue explores anthropological research on autism, both across the world and between communities of people with autism and their families. Like the first part of this feature, we will explore two articles in the current special issue.

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

Olga Solomon

Autism-spectrum disorders (ASD) are described in diagnostic manuals as an impairment of one’s ability to successfully relate to and understand other people. Yet this definition of autism relies on a specific notion of sociality that, Solomon argues, becomes much more complicated when considering autistic individuals’ interaction with therapy animals.

Solomon compares two cases that highlight autistic children’s understandings of what it means to be social: one without animals, and another with animals featured prominently in the therapeutic intervention. In the first instance, a child she calls Rosalyn is being tested in a psychological facility. The child attempts to engage in conversation with the psychologist and her parent, but is dismissed. She also shows a picture she has drawn to the psychologist, yet is again dismissed and offered a standardized picture book to complete another diagnostic task. Rosalyn’s own experiences and perspectives are cut from the diagnosis, while artificial tasks and measures that are foreign to her—such as the picture book—are substituted for “real” social materials worth engaging with.

Unlike Rosalyn, whose encounter with the psychologist in the office offers her little opportunity to demonstrate her connections to other people on her own terms, a girl named Kid has a much different experience in animal-based therapy. While Kid has no friends in school and struggles to engage socially, she demonstrates concern for her therapy dog. She worries in one interaction that she might drop him from her lap, and in another vignette, notes to her family that she fears the family dog might be jealous of her interactions with the therapy dog.

In Kid’s case, the presence of animals provided an opportunity for her to demonstrate her understandings of their emotional state and to express her feelings towards them. Rosalyn likewise attempted to engage with her psychologist and mother while in the office, but her attempts to interact were brushed aside and supplanted with artificial testing activities that did not elicit an empathetic response.

Solomon posits that these findings align with theory after the post-human turn, whenever the human actor became destabilized as the center of all social interaction and new notions of sociality began to consider interspecies engagements, particularly in the works of Donna Haraway. When animals enter the picture, these non-human actors prove central to understandings of social relationships that might not otherwise be seen in strictly human-to-human interaction, as in the case of Rosalyn.

Click here for the full article: http://link.springer.com/article/10.1007/s11013-015-9446-7

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

Elizabeth Fein

Like Solomon, Fein explores another case where individuals on the autism spectrum learn to interact and engage with others on their own, productive terms. Fein draws on ethnographic research of a summer camp for teens with autism, where they role-play as magicians, scientists, and other fantastical characters.

At the camp, the teens posit themselves in new social roles, explore new identities, and forge relationships with others in novel ways. They largely practiced live-action role playing (LARP), stylized as LARPing, an activity where participants dress and act as mythical characters in a live-action fantasy game. The founders of the camp, called the Journeyfolk, realized that ASD youth were drawn to these fantasy role-playing communities, where a shared mythology and a story arc that pitted villains against heroes created a common social space for participants.

Although participants of the games had unique behavioral qualities—in one team, for instance, there was someone who jumped on other players and another with intense hyperactivity—they accepted that they had to overcome these individual differences in order to work together. Likewise, older players who gravitated to the roles of heroes in the LARP events were often instructed to act as villains: challenging them to take on new roles beyond their own desire to act as a specific character.

The game and the camp provided a strong external structure that guided participants through tasks and activities: structure that individuals on the autism spectrum often need to navigate social situations effectively. Conversely, it also promoted a storytelling environment where characters that teens acted struggled with deep, internal, psychological quandaries, such as battling off evil spirits that possessed team mates, and struggling with being a mythological human/inhuman hybrid being. They could draw upon their real-life struggles, such as anger issues, in order to create characters that—like them—were challenged to solve problems in light of these personal difficulties.

Fein concludes, in part, that these camps both provide the structure and the social patterning that autism-spectrum individuals need to engage with others positively, while also encouraging neurodiversity by valorizing fringe nerd culture and allowing individuals to create characters that are informed by the behavioral patterns and psychological struggles of those who play them in the games.

To access this article, click here: http://link.springer.com/article/10.1007/s11013-015-9443-x

To access all of the articles in this issue, click here: http://link.springer.com/journal/11013/39/2/page/1

Special Issue Highlight: The Anthropology of Autism, Part 1

Posted by jknopes

The newly released June 2015 special issue of Culture, Medicine & Psychiatry addresses anthropological studies of autism from around the world, including the United States, India, and Italy. In this installment and the next entry on the blog, we will explore four articles published in the latest issue. This research spans the fields of disability studies, psychological anthropology, and medical anthropology, and touch on themes of identity, subjectivity, family caregiving, and community. Here, we will focus on two articles in this publication.

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

Rachel S. Brezis, et al.

Throughout India, there are limited social services and support networks for individuals with autism and their families. Furthermore, neurodiverse (and mentally ill) individuals have historically been cared for in private by family members in India, where they are hidden from the community and may be treated as a mark of shame on the household. However, despite these challenges, Indian parents of children with autism are increasingly seeking out professional programs that educate them about autism and appropriate caregiving strategies.

One such program in New Delhi, the Parent-Child Training Program (PCTP), evidences the changing view towards autism in India. The program aims to educate parents about autism and, in so doing, encourage them to educate others about the experience of raising a child with the condition. Parents bring their child to PCTP and learn alongside them. As the first program in India to provide such training, its examination proves essential in understanding the way that various populations (here in India) are now approaching the shifting landscape of autism.

Brezis and colleagues studied the PCTP to discover how the training was altering parents’ perceptions of autism and relationships with their children. They interviewed 40 pairs of parents at the beginning and end of the 3-month program, encouraging the parents to speak for five minutes without prompts regarding their child and their relationship to the child.

The authors found that parents who participated in the three-month program were less likely to describe their children in relation to an assumed “normality,” although mothers proved to be more likely than fathers to self-reflect on their relationship with their child. Similarly, while parents described their child’s behaviors no less frequently in the second and final interview, they did not note behavior in relation to other individuals’ behavior perceived as “normal.”

To learn more about this research, click here for a link to the article: http://link.springer.com/article/10.1007/s11013-015-9434-y

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

Jennifer C. Sarrett

Like Brezis et al, Sarrett also investigates Indian caregiving and parental experiences of autism, while comparing this context to autism and the family in the United States. In both cases, Sarrett asks how the home as space and place impacts the meaning of disability for people with autism. She interviewed seventeen caregivers in Atlanta and thirty-one in Kerala, and observed seventeen families in Kerala and five families in Atlanta who had also participated in interviews. Sarrett concludes that though there are some similarities in the constellation of autism-specific and biomedical services that may be available to Keralite and American families, the arrangement of households themselves drastically changes the way autistic children are cared for in each location.

In Kerala, for example, mothers serve as both full-time child caregivers as well as domestic laborers, often spending long hours washing clothes by hand and cooking from scratch. Keralite children with autism have few interactive toys that are specifically geared to engaging them, few devices that may control their movements and behaviors (such as baby gates) or assist them in communication (such as an electronic device that voices requests for food or other needs.) Such tools are common in Atlanta households. However, they have consistent household care from mothers who manage all domestic labor with no outside employment.

Households with autistic children in Atlanta, meanwhile, are specifically retrofitted for the needs of the child. There are picture cards that children may use to show caregivers and parents an item of food that they wish to eat, as well as a calendar in the kitchen or office that marks doctors’ appointments and family events geared for socialization with the autistic child. Baby gates, cabinet locks, and other safety devices ensure the child does not come into contact with household dangers (such as kitchen knives and cleaning solutions.)

In sum, these tools are designed to change and improve the behavior of the child. The home itself is structured to be a therapeutic space: requiring material and financial resources that Keralite families do not have to physically adjust their households. Instead, Keralite families focus not on improving or altering an autistic child’s behavior, but rather emphasize consistent caregiving for the child. In both cases, however, parents are committed to creating an environment (be it material or social) in which a child with autism can be integrated into the activities of the household, and thus into the family’s social world. Despite cultural, and certainly resource, differences between Indian and American families, they share a common commitment to building home support systems for their developmentally disabled children.

Click here to access the full text of this article: http://link.springer.com/article/10.1007/s11013-015-9441-z

To access all of the articles in this issue, click here: http://link.springer.com/journal/11013/39/2/page/1

June 2015 Issue Preview: Guest Editor M. Ariel Cascio, on Global Autism Studies

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Culture, Medicine & Psychiatry’s second installment of the year arrives June 2015. This special issue will address anthropological studies of autism throughout the world. To give our readers a preview of the upcoming issue, special issue guest editor M. Ariel Cascio, PhD joined our social media editor for an interview to discuss compiling the issue, what topics the articles will address, and new themes in the study of autism.

Can you tell us a little about the upcoming June 2015 special issue?

The special issue, “Conceptualizing autism around the globe,” shares anthropological (and allied field) research on autism in Brazil, India, Italy, and the United States. We talk about “conceptualizing” autism as a way to counter the idea that autism “is” or “means” one specific thing. Sometimes autism means the diagnosis measured by a certain instrument (such as ADOS), sometimes it means a more broadly defined set of characteristics (such as those in the DSM), sometimes it means an individual identity, and so many more things. The articles in this issue explore how autism is conceptualized at several different levels: in national policy, in treatment settings, and in the home.

What’s been your favorite part of working on the special issue?

I’ve just enjoyed the opportunity to greater familiarize myself with the group of scholars who are pursuing the anthropology of autism, and to work alongside scholars whose work I have long followed.

So how did you become interested in the study of autism?

I’ve been studying autism since 2008. I actually came to anthropology before I came to autism, and when I first began learning about autism, I saw it as rich for anthropological inquiry (isn’t everything!) because of anthropology’s strengths in focusing on lived experience, challenging deficit narratives of so-called “disorders,” and placing medicine and psychiatry in sociocultural context.

What was it like doing fieldwork in Italy? How do Italians see autism differently than other places in the world?

I’ve studied the autism concept more in Italy than in any other place in the world, and I’m very grateful to everyone there from whom I learned – autism professionals, family members of people with autism, and people on the spectrum themselves. I could hazard comparisons with the literature that address perceptions in other parts of the world – and some of these comparisons come through in the special issue – but for now I would like to focus on the strength of the rich description of the Italian context without external comparison. As my article in the special issue shows, autism professionals tended to take a social model of autism, focusing on creating environments that were tailored to the needs of people on the spectrum and structured to help them learn.

What are some of the challenges you’ve faced in studying autism?

As in many areas of inquiry familiar to readers of CMP, it can be challenging to communicate information about my study to people who study autism in other fields (clinical, psychological, social work, etc.). A lot of research about autism takes a positivist stance, whereas my research takes an interpretivist stance and focuses on autism as a concept whose meaning may vary rather than a diagnosis measured in a particular way. Nonetheless, I love talking about my research interests with a broad audience because in many contexts (especially in the U.S.), so many people have personal or professional interest in autism and we can always have interesting and stimulating conversations.

What’s something you think would surprise non-anthropologists about the anthropology of autism?

I would imagine non-anthropologists would be surprised by the anthropology of autism for the same reasons they might be surprised by anthropology (or medical anthropology) in general. For example, they might be surprised that anthropologists study autism all over the world, particularly if they think of the autism concept as something that represents a universal set of characteristics and experiences that are unaffected by context. The articles in this special issue really show that context matters in all conceptualizations of autism, from Brazil to the United States, from national policy to the family home.

Where do you see the anthropology of autism heading next?

I see the anthropology of autism becoming more inclusive. In her commentary, Pamela Block expresses optimism that the anthropology of autism will increasingly include researchers who identify as autistic themselves, and I agree. In addition to including more researchers with autism, I anticipate that the anthropology of autism will increasingly work to include participants with higher levels of support needs (those whom some people call “people with low-functioning autism”), and delve deeper into their lived experiences as well.

Many thanks to Dr. Cascio for sharing her insights! Look for the special issue on conceptualizing autism in June 2015, and be sure to check back for more previews of the issue, article features, and other blog entries about the new installment here on our website.