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.