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Session Overview
RN16_02c_H: Health and Disability: Health Policy for Autism
Wednesday, 30/Aug/2017:
4:00pm - 5:30pm

Session Chair: Angela Genova, University of Urbino
Location: HA.1.3
HAROKOPIO University 70 El. Venizelou Street 17671 Athens, Greece Building: A, Level: 1.

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Sick in a New Way - From Asperger Syndrome to Autism Spectrum Disorder

Niklas Mats Westberg

Halmstad University, Sweden

“We Aspies has found our identity in our diagnosis and now it’s taken away” one could read in a Swedish newspaper in 2011. This was a response to the decision to eliminate Asperger Syndrome (AS) from the leading diagnostic classifications of mental illnesses and let the condition be included in the category of Autism Spectrum Disorder (ASD). For people with AS this alteration in diagnostic classification had a strong impact on their everyday life, as subjectivities, solidarities within the aspies-community and relations to various agencies and collectives are now subjects for renegotiating.

Grounded in an on-going study, involving interviews with 20 people with AS and analysis of an online community, the paper will focus on three questions: What symptoms, problems and sufferings are AS used to decipher in everyday life and how can these experiences be analysed from a sociological point of view? How does AS as a cultural category, embedded in psychiatric discourse, structure the feelings and explanations of mental suffering and what happens with this interpretative practice when the diagnosis is incorporated in ASD? In what ways does this change transform the conditions for AS as a resource for subjectivity, collectivisation of suffering, and management of feelings of social deviance?

A goal with the research is also to contribute to the field of “sociology of diagnosis” in relation to an understanding of how psychiatry increasingly makes social interaction a subject for medicalization of human behaviour

Students with Autism Spectrum Disorder and University. Analysis of media discourse about autism policy in Poland.

Maria Świątkiewicz-Mośny1, Maja Drzazga-Lech2, Marta Ir3

1Institute of Sociology, Jagiellonian University, Poland; 2Institute of Sociology, University of Silesia, Poland; 3Wyższej Szkole Biznesu w Dąbrowie Górniczej, Poland

In Poland, we talk quite a lot about Autism Spectrum Disorder (ASD) in the context of children. Problems adults with ASD are hardly present in the public discourse. It was stressed in the latest National Database of Autism (2016) that explore situation of people with ASD in Poland.

The inspiration for the sociological research was the article in one of the biggest polish newspaper. The author, professor of one of the polish university wrote about his student with Asperger's Syndrome and problems he had with him. He used terms such as retarded, insane, limited. This article aroused extreme emotions, from very negative to understand and support. Moreover it helped to launch a debate on the presence of people with ASD at the universities. On the one hand organizations that support people with autism strongly protested against expressions used by those professor. On the other hand article shows the frustration, confusion and lack of preparation for the contact (teaching) with ASDs students.

Social changes in the Poland, also in the education system leads to the fact that more and more people with developmental disorders including ASD will undertake studies. Universities should prepare to work with such students.

Basing on Goffman conception about stigma we are going to present analysis media discourse about students with ASD, the legal provisions that regulate the status of such students, programs lead by universities to help disabled students, as well as policy for adults with autism spectrum disorder in case of Poland.

Narratives of pain, narratives of struggle: The formation of autistic identities in the Greek context and the impact on health and education policies.

Theodosia Marinoudi

Panteion University of Social and Political Sciences, Greece

In recent years autism has emerged as an agonistic field of negotiations between agents, subjectivities and collectivities, which form social identities and communities on the basis of common experience. Different conceptualizations of autism manifest in the wide range of performed social trauma and disability in the Greek context. On one hand, narratives and practices of dramatization bring forth vulnerability and pain as a strategy of integration in the existing social structures. On the other hand, radical narratives of resistance emerge as social structures are considered to produce exclusion and pain.

In this paper I explore the performative force of these discourses and counter-discourses regarding autism in Greece. How have certain (bio) social dynamics affected the dominant representations of autism? Which was the impact of their perception of autism on health and education policies? Based on discourse analysis performed on the interviews of members and advocates of two groups, this paper focuses on the ruptures, continuities and discontinuities which emerge as the signifier “autism” is claimed by collectivities, social groups and individuals either in terms of pain or in terms of struggle. Although these different and multiple aspects of autistic forms of life are predominantly presented as contradictory, in this paper I argue that continuities and relations between pain, vulnerability, power and struggle are silenced. Drawing on the experiences of autistic people, I will investigate how the interactions and interrelations between these approaches can contribute to their empowerment and the consequent relief of their social suffering.

Italian policy for autistic people: austerity in welfare services and innovation in local governance experiences.

Angela Genova

University of Urbino, Italy

The implementation process of UN convention on the rights of persons with disabilities is facing several barriers in the context of austerity welfare policy in Italy. The process is investigated considering the welfare services for autistic people calling for specific integrated health and social care interventions as well as inclusive labour policy. The reduction of qualified professionals in public health services and the lack of a strategic healthcare workforce policy, in terms of new professionals, have strongly affected the offer of local public health services in the context of increasing demand for qualified support for autistic people. The Italian workforce policies concerning health and social care services in the last decades have erected new institutional barriers and pushed for regional innovative governance experiences. The study highlights the regional differences in the regulative context as well as in the offer of services and in governance experiences. Innovation concerning the relationship between public, private and third sector organisations are emerging, outlining innovative experiences also in the area of social farms.

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