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Acknowledgments

First and foremost, I would like to express gratefulness to my little informants: Faris,

Dario, Emil, Mak, Ogi, Muhamed, Orhan and their wonderful mothers and family

members who welcomed me and generously shared their private worlds with me. I would

like to thank I. and her mother for giving me an inspiration for this research. I hope that

our friendships will live long after this study is over.

I would like to thank my husband, Faris Rujanac, for giving me encouragement and

emotional support during this difficult times of studying, fieldwork doing and thesis

writing.

I am particularly thankful to my parents who taught me to love science and my brother

whose brave decisions gave me a motivation to apply for AMMA.

My appreciations go to my supervisor Anja Hiddinga and my co-reader Stuart Blume for

their patience, guidance and insights.

AMMA provided me a memorable experience and I am grateful to all of my teachers and

fellow students for making this year special, especially to Alice Larotonda, Agata Mazzeo,

Julia Challinor and Piet van Peter for tremendous help and support in difficult moments.

Special thanks also goes to Tony Holslag and Trudy Kanis for helping me adjust to the

new cultural milieu.

My master program has been founded by Nuffic – Netherlands Fellowship Programmes. I

am grateful and honored for the opportunity to win this scholarship. I would like to thank

Leila Fetahagić, Fatima Krivošija and personnel of Dutch Embassy in Sarajevo for their

kindness and generosity.

However, my decisions wouldn’t have been made without help and encouragement of my

dear friends Fadila Serdarević, Amra Čengić and Lejla Smajić-Hodžić. Special

appreciation also goes for family Ramić who offered me a hand in the toughest moments.

My research project wouldn’t have been possible without kindness and collaboration of

Veselinka Moric (URDAS), Nirvana Pištoljević and Sanela Lindsey (EDUS) and Aida

Šahmanović and Dževida Sulejmanović (“Budućnost”).

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! #!

I knew from my earliest years that I lived in a culture that trains disconnectedness. Even

kindergarten, can be the worst possible place for a naturally connected person to be. The

loudness of the bells, the smell of the other children, the endless, cramped facing one

direction and trying to pay attention to only one person saying only one thing, and all this

in a setting without the kind of warm freedom I understood, predicted that I would fail

there. I would sit at my desk at school or on the steps of my house and feel the eating away

on the inside of me and the growing pressure outside - on my skin, my eyes, my ears - and I

would wonder if I would just disappear. I was sure it could happen and I would cry. I felt

as though I was made of stone and pain, as if my frame was a crying fossil, my mouth an

ancient desert without sound. Even still, though, as an aging woman, everything - from

blackberry leaves to bends in streams - has a personality to me, a kind of resonance that is

an extended reflection of myself inviting friendly familiarity. My world is a place where

people are too beautiful and too terrible to look at, where their mouths speak words that

sometimes fall silent on my ears while their hearts break audibly. I wonder how the world

avoids going deaf from the din of breaking and thrilling hearts and the roar of unshed

tears and uncried joy. Still ringing, they grow in my memory, like a looping brown path

that makes stories, telling me anything can happen, anything could be tru (Eddings Prince

2010:56).

Down Eddings Prince, PhD - Anthropologist diagnosed with autism

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Table of contents

Summary ................................................................................................................................ 5

CHAPTER I – INTRODUCTION ........................................................................................ 6 Background information and introduction ...................................................................................... 6 Statement of the problem ................................................................................................................ 7

CHAPTER II – AUTISM IN THE SOCIAL SCIENCES ................................................... 12 The historical, biomedical and social context of autism ............................................................... 12 The role of parents ........................................................................................................................ 16 Self-Advocates, Neurodiversity and Autistic Experience ............................................................ 16 Research on autism and intersubjectivity ..................................................................................... 17 Research in different cultural contexts ......................................................................................... 19

CHAPTER III – RESEARCH QUESTIONS, METHODOLOGY AND DATA

ANALYSIS ......................................................................................................................... 22 Research question ......................................................................................................................... 22 Research sub-questions ................................................................................................................. 22 Research methodology and data analysis ..................................................................................... 22 Participant observation .................................................................................................................. 23 Everyday conversation .................................................................................................................. 24 In-depth interviews ....................................................................................................................... 24 Data analysis ................................................................................................................................. 25 Reflections on being an embodied researcher .............................................................................. 26 Ethical considerations ................................................................................................................... 27 Children ......................................................................................................................................... 28

Dario ......................................................................................................................................... 28 Ogi ............................................................................................................................................ 30 Emil and Mak ........................................................................................................................... 30 Faris .......................................................................................................................................... 31 Muhamed .................................................................................................................................. 32

CHAPTER IV –EMBODIMENT, INTERSUBJECTIVITY AND SENSORY

EXPERIENCES OF AUTISTIC PEOPLE .......................................................................... 34 Embodiment paradigm and the body as a subject ......................................................................... 35 Concept of embodied intersubjectivity ......................................................................................... 36 Ian Hacking – Theorizing relationship between autistic people and neurotypicals ...................... 37 Sensory experience of autistic people and the “permeable body” ................................................ 39

CHAPTER V –SARAJEVO, AUTISM AND CHILDREN ............................................... 42 Sarajevo – a city in the valley ....................................................................................................... 42 Historical context .......................................................................................................................... 43 Anthropological studies in Sarajevo: political instability, contested categories and cultural

significance of social linking ........................................................................................................ 44 Fighting misconceptions and making children with autism visible .............................................. 46

CHAPTER VI – INTERSUBJECTIVITY MEDIATED BY SENSES .............................. 50 Touch – the basis of human experience ........................................................................................ 50 Tiny velvety moments of bonding ................................................................................................ 52 Mindful hugging ........................................................................................................................... 54 “Hopeful” romantic ....................................................................................................................... 56 Interacting acrobat ........................................................................................................................ 57 Magic stickers and talking maps ................................................................................................... 59 Firework of touch and movement ................................................................................................. 61 Concluding remarks ...................................................................................................................... 63

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CHAPTER VII – SOCIAL INTERACTION FROM A PARENTAL POINT OF VIEW .. 66 Construction of autism .................................................................................................................. 67 Disturbed family dynamics and absent fathers ............................................................................. 68 Child’s bodily interaction ............................................................................................................. 69 Making interests into a game of interaction .................................................................................. 71 Insistence on language .................................................................................................................. 73 Lack of understanding in the environment ................................................................................... 74 “Lost childhoods” and the cultural importance of social childhood ............................................. 75 Living in a harsh neurotypical society .......................................................................................... 78

CONCLUSION ................................................................................................................... 81

References ........................................................................................................................... 84

Annex 1 ................................................................................................................................ 93

Annex 2 ................................................................................................................................ 95

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According to biomedicine, autism is a neurodevelopmental disorder that occurs in the first

three years of life and is characterized by impairment in social interaction, delay in

language development and problems in behavior (Volkmar 2008). As a distinct psychiatric

category, autism has been constructed through a complex and ambiguous interplay

between biomedical institutions and cultural practices (Nadesan 2005, Grinker 2008,

Murray 2012). Being a condition that affects social interaction and language development,

autism is challenging for scholars interested in intersubjectivity. In this study,

intersubjectivity in children with autism is studied, using the theoretical focus of

phenomenology. Here intersubjectivity is defined as interpersonal relationship

accomplished through shared symbolic faculty and bodily presence, and situated in

space/material environments (Csordas 2008, Crossley 1996, Duranti 2010). Most of the

scholarly work that addresses intersubjectivity in autistic persons stems from linguistic

traditions exploring the ability of autistic children to participate in everyday conversation

in settings such as home and school (Ochs et al 2004, Solomon 2004, Solomon 2008,

Sirota 2010) and emphasizing the importance of other members of a particular social group

in constructing the social competence of children with autism (Ochs et al 2004). However,

the body has been largely neglected in anthropological studies with autistic people. Self-

advocate autobiographies illustrate peculiarities of autistic sensory experience (Williams

1998, Grandin 1995).

Observing social interaction of autistic people, Bagatell (2010) shows that it doesn’t

always include language, but also the body.

In this qualitative exploratory study, employing methods of participant observation, and in-

depth interviews with parents, the everyday social worlds of children with autism in

Sarajevo are explored, with primary attention for the bodily dimension of interaction with

the environment. Post-conflict political instability, demographic changes and economical

uncertainty create a specific environment in which spacial and material elements are

distinct and sometimes extreme and their meaning in the construction of categories of

difference are particularly visible. Although in the center of media attention and political

debates, Sarajevo is rather novel site in medical anthropological literature.

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The first time I met a child with autism was during my undergraduate studies – the

mother of the child was seeking volunteers for home-based intensive educational program.

Although I already had some (exclusively theoretical) knowledge on autism, I soon began

to realize that my perceptions had been significantly influenced both by my biomedical

training and by stereotypes that crawled insidiously into my unconsciousness. Spending

months engaged in everyday interaction with I., a beautiful and cheerful five-year-old girl,

I started to doubt definition of social impairments I had encountered in the literature.

My friendship with I. and her mother remarkably influenced my perspective on persons

with autism and their families. During this period, I also became politically engaged in

establishing the first parent advocacy organization for children with autism and spent long

hours solving complicated bureaucratic issues and participating in passionate debates on

how to make a change in Bosnia, the post conflict country in economical transition where I

live and where this all took place. However, at the moment when I started working as a

pediatric resident, my relationship with other association members changed dramatically –

parents suddenly seemed to be cold and distant, leaving me profoundly sad and bitter.

Pondering into the social science literature, I began to realize that what I experienced was

probably not so much an expression of personal antagonism and hostility, but an

embodiment of the more complex tensions that exist between biomedical and social model

of autism.

According to biomedicine, autism is defined as neurodevelopmental disorder that occurs in

the first three years of life and is characterized by impairment in social interaction, delay in

language development and problems in behavior. Children generally lack symbolic and

imaginative play, they have repetitive and stereotypic behavior, express rigidity when

routine is changed and have atypical interests to the objects. Hypersensitivity (to sounds or

lights), hyposensitivity (on painful stimuli), abnormalities in a sleeping pattern, eating

problems, difficulties in mood regulation or self-injurious behavior are common. There is

heterogeneity in symptoms and communication abilities, making autism rather a spectrum

ranging from non-verbal children with serious behavioral problems to “high-functioning”

language fluent children, sometimes with exceptional mathematical or artistic abilities

! (!

(Volkmar 2008). As a distinct psychiatric category, autism has been constructed through

complex and ambiguous interplay between psychiatric institutions and cultural practices

(Nadesan 2005, Grinker 2008, Murray 2012). Nadesan (2005) argues that “although there

is a biological aspect of the condition named autism, the social factors involved in its

identification, representation, interpretation, remediation and performance are the most

important factors in the determination of what it means to be autistic, for individuals, for

families and for societies” (Nadesan 2005:2).

As a form of resistance to biomedical discourses especially those linked to psychoanalytic

approaches presupposing insufficient parenthood as a central cause of autism (that left

profound consequences on relationships between biomedical professionals and parents),

encouraged by the raise of identity movements and the antipsychiatry revolution, parents

of children with autism began to organize into social movements devoted to advocacy.

Formation of parental associations had a significant impact on the general awareness,

increasing knowledge and making autism a less stigmatizing condition (Grinker 2008,

Nadesan 2005, Murray 2012, Silverman 2008). Although they emerged as a form of

resistance to biomedical model, parental organizations promote the idea of autism as a

condition that should be treated and cured, so they advocate for intensive early

interventions in order to help children have “normal” lives. However, in the last two

decades self-advocacy associations of autistic persons have begun to emerge. Self-

advocates have embraced the social model of disability, claiming that disability should be

understood in terms of social disadvantage and barriers, not physical or mental

incapacities. They consider autism to be a “culture” – an inseparable part of their

personhood and identity, emphasizing that different social interaction, language skills and

behavior should not be treated or cured, because they are not features of a disorder, but a

part of a neurodiversity spectrum (Silverman 2008, Chamak 2008).

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Being a condition characterized by differences in social interaction and language

development, autism is challenging for scholars interested in the question of

intersubjectivity: “To understand autism is to understand what it means to have

relationships with people and material objects and the role of cultural and situational

! )!

contexts in achieving joint attention, attunement, intersubjectivity, and social coordination

of feelings and actions” (Ochs and Solomon 2010:70).

Intersubjectivity is crucial for social life of humans, attracting scholarly attention not only

of anthropologists and sociologists, but also philosophers and psychologists. Its definition

ranges from the broad conceptualization as a relationship between people to more

restricted meanings, such as “sense of having shared definition of an object” or “mutual

awareness of agreement or disagreement” (Gillespie and Cornish 20010:19).

Some scholars following tradition of Merleau-Ponty highlight the importance of

embodiment (Merleau-Ponty 2002a, Merleau-Ponty 2002b, Jackson 1998, Csordas 2008,

Coelho and Figueiredo 2003), while the ethnomethodological school in sociology

emphasizes significance of everyday language, dialogue and performativity (Gillespie and

Cornish 2010:19). In my research, I concentrate on the phenomenological definition of

intersubjectivity – not as an abstract interconnection between two ‘consciousnesses’, but as

a concrete interpersonal relationship, a site of “constructive, destructive and reconstructive

interaction”(Jackson 1998:8) that is accomplished through shared symbolic meaning and

language on the one hand and bodily presence and intercorporeality on the other hand

(Csordas 2008). Furthermore, bodies are not isolated – they are situated in material

environments with different tools and artifacts facilitating intersubjective relations

(Crossley 1996, Duranti 2010). On the basis of the notion that interaction and

communication between humans is possible without involvement of verbal and non-verbal

language, Duranti (2010) poses the theoretical question whether scholars should

“distinguish among different ways or degrees of socialty” (Duranti 2010:2).

Most of the scholarly work that addresses intersubjectivity in autistic persons autism stems

from linguistic tradition and concentrates on personal narratives. Contemporary medical

anthropological theory emphasizes the importance of the narratives for giving meaning to

experience of disease or disability (cf Kleinman 1980, Good 1994). Ochs and Capps

(2001) claim that personal narratives are not only constructed in the form of plotted stories,

but also through everyday conversation. Furthermore, this mundane, taken-for-granted

conversation offers a site for intersubjectivity, because it develops on “the boundary

between two consciousnesses, two subjects” (Bakhtin1986:106 cited in Ochs and Capps

2001:3), thus having a pivotal role in relational construction of meaning. Although

children with autism are regarded as unable to create narratives, several studies in

linguistic anthropology demonstrated the competence of autistic children to participate in

everyday conversation and their ability to navigate social worlds in everyday settings such

! *!

as home and school (Ochs et al 2004, Solomon 2004, Solomon 2008, Sirota 2010). Ochs et

al (2004) advocate for a socio-cultural perspective that presumes autistic children as part of

the group (family, school, wider society), where social competence of autistic children

depends not only on their own biologically induced inabilities, but also on the values,

understanding and expectations of the other members of the social group.

Focusing on language, the body in autistic persons has been largely neglected in

anthropological studies. Recently published autobiographical narratives of autistic persons

reveal peculiarities of lived body and perception, giving valuable insight in the unique

autistic experience (Hacking 2009a, Hacking 2009b, Hacking 2009c, Williams 1998,

Grandin 2005).

Furthermore, there are few scientific data on autism in different cultures across the world.

Daley (2002) reviewed studies on autism that have been done in non-Western countries -

most of them were focused on the definition of concept of autism, help-seeking behavior,

the process of diagnosis, treatment options and family functioning, emphasizing the need

for further studies in countries in development. On the other hand, more detailed

ethnographic data come from works of Grinker (2008), who explored parental experience

towards autism in South Africa, India, South Korea and USA. Grinker (2008) claims that

although autism is a universal phenomenon in terms of symptoms, the way families

experience and make it meaningful significantly differs cross-culturally.

However, to my knowledge, so far no anthropological studies outside North America have

specifically focused on social interaction of children with autism. Moreover, most of the

studies have been done with “high-functioning” verbal children, with only few of them

having included children with more severe forms of autism (Silverman 2008).

Bearing in mind a phenomenological definition of intersubjectivity, I aim to explore

everyday social worlds of children with autism in Sarajevo, Bosnia and Herzegovina: not

the way they engage themselves in verbal (conversational) interaction, but to investigate

their bodily interaction and the role of material objects and environment in social

interaction in everyday settings such as home and school.

By exploring the peculiar ways autistic children engage bodily with their environment, I

aspire to give a modest contribution, not only to the social science literature on autism, but

also to the scholarly work on the somatically felt body (Blackman 2008:52) and the role of

embodiment in social and communicative processes.

Since space plays important role in intersubjectivity, it is important to emphasize

specificities of the context where this study has been done: Sarajevo is a capital of Bosnia

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and Herzegovina, situated in the Balkan peninsula. It is the city well-known in media,

mostly because of a recent history of war. The four-year long siege ended with many

civilian victims, significant demographic changes and ruined infrastructure recovering

slowly after devastation. Moreover, economical transition from communism to free-market

capitalism brought a period of unemployment, existential uncertainty and new social

values (Donia 2005, Malcolm 1996, Štiks 2006, Bougarel et al 2007, Markovitz 2010).

Political instability, rural-urban displacement, constant ethnic tensions and economical

unpredictability imbue everyday life of families and may impact believes, values and

attitudes of families and the way categories of difference and autism are constructed. At

the same time it is the city with intensive and deliberate bodily communication, affection

exchange and vivid social interaction (Sorabji 2008, Markovitz 2010)- which make it ideal

site to study intersubjectivity. Sarajevo happens to be the city where I was born and where

I live, but it is also the place where autistic children and their parents live and cope with –

being a researcher who speaks the language I am privileged to having access to this still

insufficiently studied context.

In this thesis, I will briefly review current social science literature on autism in order to be

able to place my study in a wider context of historical, biomedical and cultural research on

autism. Then I will elaborate the details of methodological and analytical tools that have

been used throughout my research, reflecting on the importance of embodied fieldwork in

conducting research on intersubjectivity.

Subsequently, I will describe the local context of my study, depicting not only specific

historical circumstances, but also a cultural significance of sociality and bodily

communication. Employing Merleau-Ponty’s theoretical notion on perception as a basis of

human experience and the phenomenological definition of intersubjectivity, I will present

and discuss my fieldwork data on bodily interaction of children with autism. In the last

chapter, by analyzing parental narratives, I will summarize parental beliefs, attitudes and

values towards autism and the way they influence social interaction with their children.

First, however, I would like to explain specific terminology that I employ throughout the

thesis. Terms “children with autism” and “autistic children” are utilized interchangeably.

Although “children with autism” is more politically correct and is the way parents address

their children, self-advocates claim that autism is an inseparable part of their identity and

prefer to be called “autistic individuals”.

Similar to Hacking (2009a, 2009b, 2009c) in my study I designate non-autistic people as

“neurotypicals”.

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I would like to emphasize that my task is not evaluating, judging or critiquing parenthood

or in any way questioning parental unconditional love, care or guardianship. Furthermore,

my intention is not to examine, appraise or question any of the therapeutic or educational

programs children were involved in.

Although words like “intersubjectivity”, “bonding” or “attachment” might sound

psychoanalytically informed, due to problematic relationship between autism and

psychodynamic approaches, I would like to clearly dissociate myself from the influence of

psychoanalytical discourse.

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A great amount of scientific and popular literature on autism in the second half of the 20th

century was written by, either biomedical professionals and psychologists or parents of

autistic children. Recently, autism has also attracted significant scholarly attention of social

scientists and anthropologists. According to Silverman (2008), “the idea of autism – as a

metaphor, a neurological disorders, an increasingly prevalent diagnostic category, or a

species of neurological difference”(Silverman 2008:325) became extremely popular

among social scientists interested in questions of biosociality, identity, personhood and

intersubjectivity. In the following paragraphs, I will briefly review current social science

literature on autism First, I explore the emergence of autism as a distinct psychiatric

category. Next, I reflect on the literature that points out the existing tensions between

parental and autistic self-advocate models of autism. Since I aim to explore the role of the

body in intersubjectivity in children with autism, by summarizing studies on

intersubjectivity in autism within the tradition of linguistic anthropology, I will underline

social sciences’ trend to put emphasis on language as a crucial mediator of social relations.

In addition, I will give an outline of anthropological studies on autism performed in

different cultural settings.

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As various authors have shown, the psychiatric category of autism has been socially and

historically shaped through a complex and ambiguous interplay between

biomedical/psychiatric/psychological institutions and cultural practices (Nadesan 2005,

Grinker 2008, Silverman 2012, Murray 2012).

Awareness of autism is now higher than ever before, making it a topic of millions of

websites, hundreds of journals and newspaper articles, TV talk shows, documentaries,

novels, movies, Internet blogs and forums (Grinker 2008, Murray 2012). According to

Eyal et al (2010) autism “has become the center of a social world, a universe of discourse,

complete with its own idioms, modes of seeing and judging, its own objects and devices”

(Eyal et al 2010:2). Once highly stigmatized, it has now become a “paradigmatic childhood

disorder” (Eyal et al 2010).

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Although the word itself had been previously used in psychiatry to denote a state of

“schizophrenic alienation”, autism as a distinct entity was described first in 1943 by child

psychiatrist Leo Kanner. Kanner’s seminal article contained a description of 11 children

with specific social and language deficits. A year later the Austrian child psychiatrist Hans

Asperger published similar observations (Nadesan 2005, Grinker 2008, Silverman 2012,

Murray 2012).

Autism was, nevertheless, assumed to be a form of child psychosis and was officially

categorized as a distinct psychiatric disorder only fifty years afterwards, with the

publication of the third revision of the classificatory system of psychiatric disorders

Disease Statistical Manual III (DSM III) in 1980. DSM has gone through profound

transformations and revisions, and the last version DSM-IV-TR was published in 20001,

where autistic disorder is defined as a part of a larger spectrum named Pervasive

Developmental Disorders. (Grinker 2008, Silverman 2012).

In 1999 The Department of Developmental Services in California, the governmental

agency that provides services and support to people with developmental disabilities,

published a report stating that there was a significant increase in the number of individuals

diagnosed with autism between 1987 and 1998. Published statistics were shocking and

soon afterwards, everyone began to talk about the autism “epidemic”, both in professional

and popular circles (Grinker 2008). According to Grinker (2008), autism “epidemic”

discourse is not only a social and cultural construction originating in a specific context of

post-industrial societies, but also a result of complex and profound historical

transformations in the discipline of psychiatry in general and a sphere of autism in

particular. Grinker (2008) argues that the “epidemic” is a consequence of several

intertwined factors: increased knowledge and awareness of autism (that is a result of

intensive activities of parental social movements), changes in the crude concept of autism,

broadening of the diagnostic criteria, clear delineation with childhood schizophrenia,

emergence of the new publicly financed educational facilities and decreased stigmatization

(resulting in a great number of children previously diagnosed with “mental retardation” to

be assigned as having autistic features), as well as an application of the term “autism” to

people with underlying genetic disorders (such as tuberous sclerosis).

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!1 DSM-IV-TR was published in 2000 defining PDD as severe and pervasive impairment in several

areas of development: reciprocal social interaction skills, communication skills, or the presence of

stereotyped behavior, interests, and activities. According to DSM-IV-TR, PDD has several categories:

Autistic Disorder, Rett's Disorder, Childhood Disintegrative Disorder, Asperger's Disorder, and Pervasive

Developmental Disorder Not Otherwise Specified (PDD-NOS) (Grinker 2008, cf DSM 2000).

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Speaking from the perspective of both mother of autistic child and scholar in the

communication sciences, Nadesan (2005) illuminates how institutional matrix and social

practices have influenced the process of subjectivity construction in autistic persons and

argues that “although there is a biological aspect of the condition named autism, the social

factors involved in its identification, representation, interpretation, remediation and

performance are the most important factors in the determination of what it means to be

autistic, for individuals, for families and for societies” (Nadesan 2005:2). According to

Nadesan (2005), it was the matrix of specific political, economic and institutional framing

that had occurred from the Enlightenment to 20th

century (such as identification of

childhood as a distinct life period, driving research focus to children, emergence of

pediatrics and psychiatry as disciplines, early identification of “deviance” in the context of

new compulsory education, clinical focus on personality and interpersonal dynamics) that

led to the “discovery” of autistic disorder by Leo Kanner and Hans Asperger. Building her

argument on the Foucauldian idea of governmentality, the author claims that throughout

19th

century disciplinary power of the state has been exerted via social institutions of

biomedicine and psychiatry in the process of creating standards of “normality” and

“difference”: increase in surveillance of childhood, standardization of growth and

development and design of intelligence tests. Further, examining psychoanalytical and

cognitive psychological paradigms, Nadesan (2005) shows how language and practices of

these perspectives shaped the construction of the “idea of autism” – and its “naming,

identification and remediation” (Nadesan 2005:80). Popularization of psychological

discourses in the period of post World War II in the USA and medicalization of childhood,

with the wide acceptance of standardized clinical tests and norms, altered parenting and

pediatric practices, and led to the “historically unprecedented forms of surveillance and

social engineering” (Nadesan 2005:81).

By introducing theoretical frameworks of moderate materialism and Ian Hacking’s concept

of “interactional kinds” and “biolooping”, Nadesan (2005) successfully resolves these

conflicting stances between biomedical and social constructionist’s model. She finds

inspiration in the recent theorizing in disability studies that repudiates traditional

distinction between (biologically determined) “impairment” and (socially constructed)

“disability”, and tries to explain how cultural practices have been inscribed in biological

bodies, modeling therefore the construction of meaning and interpretation of subjective

experiences. Nadesan emphasizes the importance of the “lived bodies” and the way

individuals subjectively experience, articulate, perform and resist the cultural context of

! "&!

disease or disability. On the basis of Fox’s analysis, she advocates a dialectical approach

between biology and culture, suggesting that “the experienced body – that nexus of

corporeality and culture – is temporally and spatially emergent so that it is always/already

becoming” (Nadesan 2005:182). Employing Ian Hacking’s notion of Asperger syndrome

and high-functioning autism as “21st century niche conditions”

2, she argues that although

being recognized in 1940s, these disorders became widely diagnosed only at the end of

20th

century, due the specific historical conditions.

On the other hand, Murray (2012) reflects on how both knowledge and diagnostic criteria

have changed throughout the history, emphasizing that “the shifting terrain of what passes

at any moment about autism (…) conditions the implementation of the diagnostic method;

it is a classic example of a medical “best practice” moment, one in which the expertise of

the here and now is enacted even as that specialist knowledge necessarily admits to its

limits” (Murray 2012:12). He argues that shifting dynamics in biomedical and

psychological contexts have significantly altered popular representations of autism, leaving

profound consequences for all social actors involved (autistic children and persons

themselves, parents, professionals, educators, speech and occupational therapists, wider

public). Murray criticizes the language biomedical experts and psychologists use to define

autistic experience - rhetoric that largely problematizes autism (in terms of “deficit” or

“impairment”) and presupposes suffering as an integral part of autistic experience. Cultural

representations embedded in metaphors such as the child being “imprisoned” in autism that

requires “breakthrough”, because autism “masks” or “veils” the “real” person (Murray

2012:27) are, according to Murray the guiding principle for many families to search for

treatments that “fight autism” and promise release of a “normal child” from autistic

imprisonment. Reproduction of these metaphors in popular literature and media further

devalues personhood of autistic children, promotes stereotypes of autistic persons as

incompetent social subjects and encourages stigmatization and social isolation (Murray

2012).

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!2 Nadesan referes to Ian Hacking’s book “The Social Construction of What?”(1999). To elaborate the ways

biology and culture interact and mutually reinforce he introduces the concept of “interactive kinds” (or

“classificatory looping”)–the classificatory systems that are created within peculiar “matrices of institutions

and practices”(Nadesan 2005:24). On the other hand, he defines “biolooping” as the process “whereby

mental states, individual comportment, and cultural practices can affect biological outcomes”(Nadesan

2005:24). Hacking argues that schizophrenia and autism are “interactive kinds” that are involved in the

process of “looping” in the matrix of different parental interpretations, biomedical/psychological/psychiatric

discourses and therapeutic practices. Furthermore, Hacking defines high-functioning autism as a “niche”

disorder – previously clinically unrecognized, it has become widely diagnosed at the end of 20th century

because of specific historical circumstances and cultural practices (Nadesan 2005:23-27).

! "'!

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During the 20th

century children with autism have been misdiagnosed, marginalized,

institutionalized and very often maltreated. The birth of autism advocacy movements is

closely related to the “dark age” of the autism history – the period of 1950s and 1960s,

psychodynamic theories and the figure of Bruno Bettelheim. According to contemporary

psychoanalytical perspectives autism was regarded as a child’s “withdrawal” due to the

mother’s psychopathology. Mothers were blamed for inadequate parenting and children

treated by separation from “bad” parents. However, a group of parents resisted such

treatment and began to organize, encouraged by identity social movements and

antipsychiatry revolution. (Grinker 2008, Murray 2012, Silverman 2012). The first parental

association was the Society for Psychotic Children (later re-named into the British Society

for Autistic Children), established in 1962 in United Kingdom. A year after, The National

Society for Autistic Children was formed in the USA. Although both had started as small-

scale projects, they increased over time, both in the number of members, scope of activities

and strength of action (Murray 2012). During the last twenty years, hundreds of parental

organizations blossomed all over the world and some of them adopted the advocacy for

autistic adults in their policies. Silverman (2008) points out different ways in which

biological information about autism has been used in order to form a group membership in

parental organizations. Whatever the basis for the biological membership, almost all

parental organizations agree that autism should be treated and cured, so they advocate for

intensive early interventions in order to help children have a “normal” life.

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During the last two decades with the advances of technology, self-advocacy associations of

autistic persons began to emerge in the virtual worlds of Internet-based social networks.

The most famous self-advocates are Jim Sinclair, Ari Ne’eman, Amanda Baggs, Donna

Williams. Sinclair and Williams were among the founders of Autism Network

International (ANI), the first self-advocacy association established in 1992 (Murray 2012).

While social movements of parents have been framed within a biomedical model, self-

advocates have embraced the social model of disability, claiming that disability should be

understood in terms of social disadvantage and barriers, not physical or mental

incapacities. Disabled people should be treated equally as non-disabled, having therefore

! "(!

the same political rights and the full citizenship. Moreover, people with disabilities do not

have “special needs” and should not be segregated in everyday life (for example in public

transport, the educational system or the health services). Although the knowledge and

assistance of professionals is appreciated, disabled people should be the ones who set the

agenda and make decisions about their own lives (Shakespeare and Watson 1998).

Assuming that autism is indivisible part of their personhood and identity, autistic persons

claim that different language skills and bizarre behavior are not features of a disorder, but a

part of neurodiversity (Chamak 2008). In this way, frames of parental and self-advocacy

social movements differ substantially.

From the self-advocacy groups’ point of view, currently very popular behavioral methods

in treatment of autism are considered as exhausting, “normalizing” and cruel, especially if

practiced without client’s consent (Bagatell 2010).

Although parents mostly live with their children, care for them and love them

unconditionally, they are indeed “neurotypicals”, lacking autistic experience, self-

advocacy groups suggest. Many people with autism went through intensive therapies

themselves, and are able to provide an insight from the “emic” point of view. However,

one has to bear in mind that autism is a wide spectrum classificatory category and while

self-advocates are high-functioning, verbal, sometimes with exceptional artistic or

mathematical abilities, most of the children with autism are non-verbal, unable to

communicate and incapable to live on their own (Bagatell 2010).

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Recently, inspired by the discourse of autistic difference, uniqueness of experience and

specificity of social interaction, attempts have been made to approach and understand

subjectivity in people with autism. However, Silverman (2008) warns that this emphasis on

distinctiveness, especially if grounded on genetic or psychological attributes can produce

“essentializing discourse” and “treat people with autism as members of a distinct species of

humans to which our obligations and responsibilities might be different”(Silverman

2008:333). She advocates an approach of intersubjectivity that attempts to see children

with autism as competent social actors that very often successfully navigate everyday

social worlds, although these worlds have been designed for the people with “typical”

comprehensive skills of social and cultural norms and expectations. In that sense, research

! ")!

in the field of linguistic anthropology that focuses on conversational competence of

children with autism in everyday settings, such as home or school is very valuable.

Largely influenced by frameworks of Husserl and Schutz, scholars under the theoretical

umbrella of everyday sociology have extensively studied social interaction. In that sense

the perspective of ethnomethodology that examines natural spoken language in mundane

settings is crucial and had an impact on linguistic anthropology (Attewell 1974, Atkinson

1988, Adler et al 1987).

In the book “Living Narrative: Creating Lives in Everyday Storytelling” (2001), Ochs and

Capps point out the importance of conversational narratives of personal experience as a

“social glue” that connects family members and friends and provides a medium to make

sense of life events.

According to Ochs and Capps (1996), personal narratives are defined as “verbalized,

visualized, and/or embodied framings of a sequence of actual or possible life events”(Ochs

and Capps 1996:19), and they can be expressed through various genres and modes. They

are usually constructed around troubling events, trying to resolve “inconsistencies between

expectation and experience” (Ochs and Capps 1996:37). Moreover, narratives are situated

on the “interface between self and society”(Ochs and Capps 1996:19), enabling

participation in social life and establishment of interpersonal relationships. Narratives can

be partially constructed from the “outside”- children often blend other people’s stories with

their own experiences, or by direct interference of “co-teller” through verbal inputs, eye

contact, mimics or body gesture (Ochs and Capps 1996). Participation in everyday

conversational narrative is a complex process that involves multiple simultaneous actions

resulting in the integration of emotions and language. Regarding the fact that autism is

defined as a condition that affects all of these above-mentioned spheres, conversational

narrative can present a challenge for children diagnosed with autistic spectrum disorders.

However, according to Sirota (2010) autistic children actively participate in construction of

personal narratives in family settings showing how “everyday narratives of personal

experience offer a vehicle for the expression of the children’s subjective life worlds and a

venue for self-presentation and intersubjective attunement in which social and moral

distinctions of normality and difference are at stake” (Sirota 2010:93)

Although use of language by autistic children is largely unconventional, and sometimes

even unintelligible and hardly interpretable, ranging from slight pragmatic difficulties to

“entirely cryptic utterances, impossible to perceive as contingent with any object, linguistic

or physical, in the interactional context”(Solomon 2008:152), Solomon argues that

! "*!

children with autism are able to strategically navigate terrains of language and participate

in everyday narrative activities (Solomon 2008). Ochs et al (2004) argue that when talking

about “social impairment” in children with autism, clear distinction between “social” and

“communicative” must be established (Ochs et al 2004:156). Authors advocate for a socio-

cultural perspective that presumes autistic children as members of the group (family,

school, wider society), where their social functioning depends not only on language

impairment itself, but also on the input given from the other group members, making social

functioning as “an on-line, real-time process involving knowledge of historically rooted

and culturally organized social practices” (Ochs et al 2004:157).

The studies of Ochs et al (2004), Ochs and Solomon (2010), Solomon (2004, 2008) and

Sirota (2010), examining children with autism as members of social groups and the way

they commence and construct personal narratives, are very relevant if intersubjectivity of

children with autism is to be studied. Furthermore, these articles give interesting examples

of how discourse analysis can be applied in studying conversation in everyday settings.

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Only few studies have been done on autism in non-Western settings. Although being

scarce, consisting mostly of case studies and brief reports, existing literature suggests that

autism is, similarly as schizophrenia, mostly seen “as a biological condition that is

culturally shaped in symptoms and course” (Daley 2002:543). However, little is said about

how diagnostic criteria, constructed in USA and Europe fit different cultural settings.

(Daley 2002).

On the basis of his fieldwork in South Africa, India, South Korea and USA, Grinker (2008)

claims that the way people perceive autism is dependent on cultural context: although he

considers autism a universal phenomenon in terms of symptoms (delay in language

development, impairment in social interaction, unusual and stereotypic behavior), the way

families experience it and make it meaningful differs cross-culturally.

Shyu et al (2010) explored parental explanatory models on autistic spectrum disorders and

its correlation with the treatment seeking behavior in Taiwan. According to the authors,

large numbers of parents attributed autism to both biomedical and culturally specific

supernatural causes (such as for example “lost soul”). Therefore, they searched not only for

! #+!

treatments that are available globally, such as occupational and speech therapy, sensory

integration, or special diet, but also for traditional and supernatural treatments.

By using phenomenological approach, Desai et al (2012) explored the lived experience of

parents of children diagnosed with autistic spectrum disorders in Goa. India. Results

revealed both culturally specific and universal elements of experience.

After a series of ethnographical studies on service provision for children with autism in

Iran, Samadi and McConkey (2011) have identified three important dimensions of autistic

spectrum disorder in developing countries: lack of precise epidemiological research on

prevalence, problems with parental understanding of autism as well as difficulties in

establishment of educational services in resource-poor settings. Samadi and McConkey

explored explanatory models and found that majority of parents attributed autism to

pregnancy problems, environmental factors, damage to child’s brain and body, spiritual

and religious factors, hereditary influence (genetics), lack of social connection-

relationships of the family with the rest of the community. Authors advocate for adaptation

of educational approaches and parental programs created for well-off Causcian middle-

class families to specific cultural contexts, incorporating local explanations of autism,

cultural beliefs and financial possibilities. In terms of support, parents in resource-poor

settings depend largely on informal assistance provided by family and the community

(Samadi and McConkey 2011).

Investigating caregivers in a school for children with autism in Cape Town, South Africa,

McGraw-Schuchman (2012) sheds light on culturally mediated explanatory models,

coping strategies and help-seeking behavior.

Through methods of visual ethnography, Hwang and Charnley (2010) examine children’s

experience of living with an autistic sibling in South Korea. Although autism is perceived

as “strange” and largely stigmatized in Korean society, by spending time together and

living everyday ordinary lives with their autistic brothers and sisters, most of the siblings

in their study have reconstructed the meaning of autism as a familiar condition (Hwang

and Charnley 2010).

Kim (2012) explored the construction of autism in different cultures: Korea, Nicaragua and

Canada. While Canadian professionals and parents relied largely on North American

trends of diagnosis, treatment and education of children with autism, autism as a

classificatory category has been differently constructed and given meaning in Korea. In

Korea, psychiatric entity of “reactive attachment disorder”(RAD) is usually utilized to

denote children with autism. Supposedly due to the strong patriarchal tradition, disability is

! #"!

understood as a parental failure, mothers blamed for having a disabled child, and diagnosis

embedded in cultural feelings of shame and guilt. In search of acceptance and in order to

provide sufficient educational services for their autistic children, some of the Korean

parents emigrated to United States or Canada. In Nicaragua the situation is again different,

Kim argues that due to limited financial resources and lack of information, there is no

defined category of autism in this country at all. Autistic children are seen as a part of a

general category of disabled children and accepted by the community (Kim 2012).

To summarize, autism has come late into a focus of social sciences’ enquiry. Researchers

are primarily interested in historical construction of psychiatric category of autistic

disorder, problematic of social movements and biosociality as well as the questions of

autistic identity. Recent studies in linguistic anthropology provide a valuable insight into a

language mediated intersubjectivity and the way children with autism navigate their

everyday social worlds. However, bodily-communicated intersubjectivity hasn’t been

much studied much. Moreover, literature on social interaction in children with autism in

other cultures is largely lacking.

! ##!

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Since I aimed to investigate everyday bodily interaction of children with autism as well as

the role of material objects in intersubjectivity, the most suitable type of research design

was a qualitative explorative study.

Although my first intention (developed in my research proposal) was to explore also the

use of language in children with autism in everyday settings, due to the short period of

fieldwork, and methodological limitations (rejections of families to be recorded on voice-

recorder), I redefined my research questions as follows:

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How do children with autism socially interact non-verbally (bodily) in everyday settings

such as home and school in present-day Sarajevo, Bosnia and Herzegovina?

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How do space and material objects in this context influence social interaction of children

with autism?

In this context how do beliefs, values and attitudes of family members towards autism

influence social interaction of children with autism?

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In order to be able to study intersubjectivity and to explore everyday life-worlds of

children with autism in the short fieldwork period of six weeks, I chose to concentrate on

six case studies: Dario, Ogi, Faris, Mak, Emil and Muhamed.

Fieldwork was performed in the six-weeks period of May 10th

to June 20th

2012 in

Sarajevo, Bosnia and Herzegovina. During my fieldwork, I was lodged at my home and

visited families during the day according to their preferences, staying sometimes late in the

! #$!

night, but not overnight. Exact length of my daily research activities significantly varied

from day to day, taking in average from 4 to 15 hours per day.

Three families have been recruited through the parental advocacy association URDAS

thanks to the courtesy of its president Ms Veselinka Moric. Two families were recruited

through personal network of acquaintances. Six children were included in a study

regardless to their age, gender or diagnosis within autistic spectrum in terms of severity.

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In conduction of my fieldwork, I followed recommendation of Gillespie and Cornish

(2010) to use combined methods of ethnographic engagement and behavior observation as

the best methodology to investigate intersubjectivity.

The principal site for the research was a child’s home, where I spent as much time as the

families allowed me to, doing participant observation. Several authors pointed out that

participant observation in home settings is a method of choice when exploring sociality of

children: games, interaction and participation in everyday activities (James 2001). I was

careful not to disturb family dynamics or its emotional functioning.

Since my aim was not only to observe, but also to interact with the child while playing,

doing homework or performing leisure activities I was engaged as a “complete participant”

according to Gold’s typology of observational methods (Green and Thorogood 2009:150).

Although my position as a researcher did not fulfill criteria for “friendship as method”

(Tillman-Healy 2003), to some extent reciprocity and disclosure of my private life was

necessary and my fieldwork resulted not only in gathering the research data, but also in the

establishment of deep friendship bonds with families. In my study special emphasis was

put in the crucial points of everyday family interaction, such as mealtimes (Ochs and

Shohet 2006) or leisure afternoon and evening activities. I followed families in their daily

activities, such as picking up children from kindergarten or schools, shopping, visiting

parks and playgrounds. In addition, we organized several small excursions in the nearby

nature resorts. During my fieldwork I engaged in every possible activity of the family that

they allow me to participate in: from washing dishes, carrying bags from a store to helping

in meals preparation. I didn’t do this only to become more a “participant” in the field, but

because I really felt I should reciprocate, it was my small contribution to their hospitality.

All families were invited also to my home as an act of gratefulness and reciprocity for

! #%!

sharing their private lives with me. I observed interactions not only with family members

and close friends, but also with unknown people in public spaces.

Since all except one child were included in public education, I followed them to their

schools and kindergartens. Access to schools and kindergartens was obtained by courtesy

of Ms Nirvana Pištoljević, director of EDUS Center and Ms Dževida Sulejmanović,

director of Association “Budućnost”. Official permit to assess institutions Zavod

“Mjedenica” and Center “Vladimir Nazor” has been issued by Ministry of Science,

Education and Youth in Canton Sarajevo.

At kindergarten and school I spent time observing interaction with schoolmates and

teachers. Although different “task-centered” techniques such as picture drawing, objects

grouping or storytelling (James 2001) that use non-verbal media were planned to be used

in order to facilitate interaction, they were not actually employed during the fieldwork,

because it was not possible to implement them due to specific class structure and dynamic.

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Although in my research proposal I intended to explore use of language in everyday

settings by recording everyday conversation that would have been analyzed later through

the method of discourse analysis, this was not possible to realize because of two reasons.

Firstly, most of the parents felt very uncomfortable and rejected voice recording. Secondly,

in cases when parents agreed to be recorded, it was not possible to maintain recordings due

to practical reasons and children’s unusual interest for technical devices: even if my

recorder was put on a very remote place, they would have been able to find it, play with it

or switch it off.

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In order to assess parental believes and attitudes towards autism, their experience of having

a child with autism and opinions on social interaction with their child, in-depth interviews

with parents were conducted. As the setting of an interview plays an important role (Green

and Thorogood 2009), interviews took place at home or another location of preference (for

example a café), in the absence of the child when possible. If the child lived both with

mother and father, I intended to interview parents separately. However, during my

! #&!

fieldwork I managed to obtain only one interview with a father. Visual clues, such as

family photographs were used in order to facilitate talking about sensitive issues, such as

child development and autism diagnosis (Green and Thorogood 2009). In the case the child

had a neurotypical sibling, an in-depth interview was performed (with informed consent

for both child and parents) with the sibling, too – this was the case with only one family. A

topic list was prepared in advance according to Spreadley’s (1979) methods of

ethnographic interview (enclosed in annexes), while technique guidelines provided by

Seidman (1998) and Kvale (1996) were followed while performing an interview. Special

precaution was taken to avoid leading questions influenced by my medical background and

on adequate rapport building (Patton 1990). Problematic terms, such a “disorder” or

“problems in development” were negotiated with parents and iterative testing of concepts

and themes was performed in advance (Rubin and Rubin 1995). However, although in-

depth interviews were postponed to the end of the fieldwork in order to build trust and

confidence, and that the idea of being interviewed had been discussed with parents in

advance, two parents avoided being interviewed, while one parent rejected being recorded

while doing the interview. Since I spent lots of time with mothers in informal conversation

(sometimes until late in the night) discussing extensively most of the items mentioned in

the topic list for parents, I respected their decision and did not insist on formal interviews.

In addition to parents of six “case” children, two supplemental in-depth interviews were

performed with other mothers of autistic children in order to get a more comprehensible

picture on parental beliefs and attitudes regarding autism. Furthermore, in order to grasp

the general circumstances regarding social interaction with autistic children four in-depth

interviews were conducted with children’s educators and volunteers.

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My field-notes were transcribed and rewritten in the form of stories, coded and analyzed

using pragmatic combination of thematic content analysis and grounded theory analysis

(Green and Thorogood 2009).

All interviews were transcribed using transcript conventions (Green and Thorogood 2009),

coded manually and analyzed using the method of narrative analysis (Green and

Thorogood 2009:213).

! #'!

Transparency was ensured by explicitly describing methods used, reliability maximized by

accurate field-notes taking and precision in data transcribing and coding, while validity

was enhanced by the method of respondent validation and discussion of my observations

with parents and caretakers (Green and Thorogood 2009:221).

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Since a key concern of my research was how intersubjectivity was bodily mediated,

conducting my fieldwork required not only visual acuity of my observations and

participation in daily activities, but a complete bodily participation and awareness of

everything that I sensed and felt.

During my fieldwork, I engaged myself in rich interaction with children: most of the time I

either waited patiently until they initiated a first contact or approached them very carefully,

not to disturb them until they got used to my presence. Playing with children sometimes

meant “typical child play”: entertaining with toys, drawing, singing, or cartoons watching.

However, frequently interaction looked quite different and included different sensory

modalities, such as touch, hug, dance, smell, roll on Pilates balls, or inventing “games”

contextually. Many of these “games” might seem quite bizarre at first sight for most

neurotypical people (this is what they did look to me at the beginning of my fieldwork),

but these unusual games were actually imbued with social meaning and provided sites for

intensive intersubjectivity.

To be able to grasp these tiny moments of bodily communication, I had first to broaden my

definition of conducting fieldwork to include not only data gathered by pure observation,

but also what I perceived and felt with my body. In this sense, I was inspired by the

methodology proposed by scholars of sensuous anthropology tradition, such as Stoller

(1997) and Okely (2007).

In the article “Fieldwork embodied” (2007), Okely advocates for an embodied approach:

participant observation requires not only standard visual observation, but also a significant

bodily engagement in order to be able to truly experience the field.

Practicing embodied fieldwork for me was a two-way process: not only that my sensory

channels became “opened” for the new ways of experiencing social interaction, but in turn

my sensory perception has been altered, what Stoller (1997) denotes as “how experience-

in-the-world might awaken a scholar’s body” (Stoller 1997:xi). Practically speaking, it

! #(!

meant that I became aware of many things previously taken for granted, such as the texture

of books, food or furniture, light reflections, or noises of electrical devices.

Embodied fieldwork, although enriching, needs to be taken with precautions: hugging and

cuddling (or other forms of touching) of children’s bodies is generally regarded as

unethical and unprofessional behavior. In some countries it is even regulated legally and

researchers are highly recommended to avoid it. However, due to specific demands of the

field, it is not always possible to avoid physical contact during fieldwork. Blake (2011)

successfully resolved this ethical dilemma during her fieldwork at Child Oncology

Department in Cape Town. After being almost conditioned by children to participate in

physical interaction in order to be let into their everyday life worlds, she engaged herself in

playing and cuddling, employing what she calls a “new embodied ethics”. That meant

being no longer a detached observer, but a researcher who feels, cares and empathizes.

Since hugging and cuddling children is regarded socially and legally acceptable in

Sarajevo if approved by parents, during my fieldwork I engaged in physical contact as

much as the context required. However, I never stayed with children alone, without

parental supervision. In the case of a boy who was enrolled in a home-based program, we

interacted alone in his room (as all his volunteers do), but with video surveillance and his

mother watching us in the nearby room.

By spending a remarkable amount of time together at their homes, school and park as an

embodied researcher I became significantly emotionally engaged in my field, making a

strong affectionate bonds both with children and parents.

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Since I recruited families through parental associations in which I was active as a

volunteer, I was aware that my previous experience as well as my ambiguous position as

anthropologist/medical doctor might have influenced the results of the study. And, indeed,

at the beginning of my fieldwork, parents were hesitant to participate, expecting an

ambitious and authoritarian biomedical professional in a white coat, ready to appraise and

judge their parenthood and family dynamics. However, thanks to Dario’s family and kind

recommendations parents gained thrust to let me into their intimate worlds.

Details of the study were explained and parents were requested to sign an informed

consent for participation in the study. All the names and places in the study (including

! #)!

parental organization) were given pseudonyms and efforts were made to preserve

confidentiality and make families unrecognizable (Green and Thorogood 2009). Families

were encouraged to feel free to abandon the study at any moment if they felt that research

affected their emotional state or everyday functioning. I had decided beforehand to

discontinue the study, in case children showed distress with the presence of a researcher.

However, most of the children accepted me eagerly and we made very strong emotional

bonds.

During my research I followed the “Code of Ethics of American Anthropological

Association” (1998). Although procedural ethical approval was not necessary, “ethics in

practice” was respected (Guillemin and Gillam 2004). During my research data were

discussed with families in order to assure adequate interpretation.

Several times during my fieldwork, I faced very difficult ethical dilemmas, especially

regarding the fact that I happened to know much more details of family lives than I was

supposed to – in that sense I had to be very careful during ethnographic writing to maintain

the balance between accurate data presentation and my informants’ privacy protection.

Furthermore, disengaging from the children and families at the end of my fieldwork, after

we had become so intimately connected, was a very painful process for me, taking me a

long time to recover afterwards. However, I hope that these deep friendship bonds will

remain long after my study is over.

The purpose of my study was not only to supplement scholarly work on social interaction

of children with autism, but also to show how do families in Bosnia and Herzegovina live

with autism in their day-to-day life. Therefore, I hope that my results, given back to my

informants, will have practical benefit for the children and families in terms of better

understanding, less stigmatization and possible impact on policy-making.

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Dario is a blonde, tall and cheerful eight-year old boy, who likes music, cartoons and his

CD player. He also likes walking, eating čevapčići3 and pizza, and horse riding. His day is

well structured and routinized: in the morning, after he gets up and eats his breakfast, he

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!3 Type of traditional food made of minced meat

! #*!

goes to school where he spends several hours. He comes home at 13h by school bus (that

he likes a lot) and has lunch with his grandparents. In the afternoon twice a week he visits

his speech therapist. At 16h, he goes with his mother or father for a walk: the peculiarity of

this walk is that it follows the same route every single day sometimes for a period of

several months. Current routine includes going to the center of the city and visiting a

newly built shopping center, where he climbs the third floor by escalator stairs, touching

toys and DVDs in the One-to-Play toy store, and then descends to the ground floor by

elevator (always the one on the left) where he stands in the corner, presses his nose to the

smooth glass wall and enjoys the sight. In the supermarket downstairs he rearranges the

bottles of water, Coca-cola and Fanta in the refrigerator (or occasionally scatters them

around) and picks up a plastic half-litter bottle of Sky-Cola, a local, less tasty and cheaper

variant of Coke. During the rest of the walk, he keeps it as a precious gift, firmly pressed to

his red rain jacket with a huge hood, tapping it from time to time with his fingers. He stops

at exactly three shop windows: a CD shop, a mobile phone store and a clock maker’s

lodge, pressing his face and his fingertips to the glass (thus annoying the nervous and

obsessively clean owner). Sometimes he just opens a door, continuing his expedition

before the door closes automatically.

When he comes back home, he watches cartoons on TV or plays with his laptop-like CD-

player (his precious device), comfortably lolling on a sofa. Sometimes, on a working

afternoon, he practices academic skills with his mother Ana. His father Janko usually

works afternoons and comes home around eight o’clock. At this time, Dario goes two

floors below to have dinner with his grandparents. After he comes back, it is time to settle

down, have a bath, to brush his teeth and to go to sleep.

Dario was diagnosed with autism at the age of three years – his mother (who consulted

books about baby development) noticed a delay in speech and brought him to a

pediatrician. Furthermore, his parents thought he seemed not so interested in other

children, while constantly refusing to play with toys that his peers adored.

His parents describe him as a “happy child”, while caretakers and teachers attribute him to

be “extremely cuddly” and “good-natured”.

Dario doesn’t express himself verbally too much. He uses the word “ta-ta” (daddy) for

most of the things he wants, but always with different intonation. His favorite word is

“kiss-kiss” – it has multiple meanings, but always denotes things or activities that he likes

the most: cuddling, hugging, a kiss, or chips.

Dario’s parents are intensively engaged in political activities of parental association.

! $+!

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Ogi is four-year-old boy, quiet, modest and sensitive, with fair hair, deep brown eyes and

almost transparent skin giving him a fragile appearance. His great passions are chocolate

and cartons of juice. But what he adores most is cars (in all forms, dimensions and colors),

engines of all kinds (trains, trucks, tractors) as well as a cartoon “The Cars”. He loves

animals too (and has a pretty huge collection of animal toys), especially horses. His

favorite activity is being in a park, swinging, teetering or sliding down a toboggan. He

spends most of the time with his mother Lejla, since his father works abroad. In the

morning he attends a kindergarten: three times a week he goes to a local mainstream

kindergarten, while twice a week he is enrolled in the activities at a special school. After

his mother picks him up from the kindergarten, they go to the park in their neighborhood

and play there for a while. Although having a university degree, Lejla is currently

unemployed, so volunteers as a personal assistant for blind people. Since she does not have

any close family members in Sarajevo, Ogi follows her in her afternoon job activities

patiently, holding her hand while walking. Once a week, Ogi works with a speech

therapist. When they come home, Ogi has dinner. Late in the afternoon, depending on the

weather, they go for a walk again, or stay at home exercising academic skills. In the

evening, he watches cartoons on YouTube, has a bath and goes to sleep. His mother

describes him as “nice, loving and cuddly”. He was officially diagnosed within autistic

spectrum half a year ago, after a period of observations and clinical examination. Lejla

says that she was crying all the time when heard of diagnosis, while his father was sad and

silent.

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Emil and Mak are twin brothers born four and half years ago in Sweden, where their

grandparents moved at the beginning of the war in Bosnia. Although they resemble each

other very much in appearance, they differ quite a lot in temperament and bodily

expression. Mak is energetic and loud, “entertaining” and “charming”, as his speech

therapist portrays him, while Emil is shy and sensitive, more of a “romantic kind” his

mother Irma would add. Both are smart, blond haired, with wonderful deep blue eyes.

Every morning, they pack their little school bags; sit in their baby backseats in a car and

depart for kindergarten, meanwhile spinning little car toys between their small fingers.

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Mak sometimes recites his favorite song: “Mouse caught a cold, opened a jip lock,

travelled a route long, to be examined by a cat doc”, while Emil leans on the edge of his

seat, touching a rough texture of his seat and gazing through a window. Usually, they spent

eight hours in their mainstream kindergarten, then they have speech and behavioral therapy

in the afternoon twice a week. When they come home, they sit in their feeding seats and

have dinner. Afterwards, they play together on the floor constructing wooden railways,

arranging cars or building a farm with rubber animals. Mak likes dogs very much. Emil

loves trees, collects flowers and small branches. Sometimes he talks to the tall pine trees,

whispering sounds in their dark green spines. But, above all Mak and Emil have a passion

for letters and numbers: they have numerous sets of alphabets, in all dimensions, form and

material. In the afternoon and evening, their mother, energetic and diligent

businesswoman, works with the boys practicing speech and academic skills, employing a

program that is a mixture of behavioral, floor time and invented activities. In the evening,

they watch cartoons in little armchairs situated opposite a TV set, holding each other’s

hand.

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Faris is a beautiful, playful six-year-old boy with a modern haircut, usually dressed in his

favorite T-shirt with a kangaroo (he seems to be a postmodern version of Tom Sawyer).

Motorically extremely skillful, he is a master of sports: cycling, swimming, scooter riding.

His legs are usually full of bruises, from his interaction with a doorframe that he often

climbs, playing in the garden with his dog, or scooter riding down the steep street. Faris’s

favorite place in the artistically decorated apartment designed by his mother Maja, is a

windowsill above a blue sofa in the living room. From the windowsill, he can observe with

his narrow street surrounded by traditional old town houses. He usually reports on what is

happening around: “Dino is coming from the gym”, “Lamija is in the garden”, “Nino plays

football”, or “Baha’s lilac car is parked”. Sometimes, his reports follow real happenings,

while occasionally they are imagined, living in the sentences he repeats all over again,

stretching his legs down the sofa’s back, bathing in the gentle afternoon sunshine. Faris is

included in an intensive home-based program: his mother and volunteers (usually family

members and neighbors) are scheduled in one-to-one two-hour-long interactive sessions in

a specially designed “non-distracting” room. While volunteers are in the room playing with

! $#!

Faris, Maja watches them on her TV set and intervenes if necessary. Faris doesn’t eat solid

food, its texture makes him vomit, so his mother blends his meals and serves them in a

baby bottle with a rubber tip. He is also on a special gluten-free, casein-free diet with lots

of supplements that he takes with each meal. Faris likes to have his lunch on the

windowsill, while observing the street. Sometimes he rushes outside, shouting: “Never go

outside alone. Never run into the street. Never go to grandma alone… Mummy, may I go

outside, please!”

Occasionally children from the neighborhood join him playing in his garden. From time to

time, he plays with Uma and Adnan, who are also diagnosed with autism, while their

mothers are sharing experiences with Maja sipping coffee from the colorful plastic cups

(since Faris broke the glass and porcelain ones).

Faris is diagnosed with autism and hyperactivity three years ago, after a painful period of

family’s frustration and exhaustion by his behavior (non-eating, non-sleeping, head

banging). The moment Faris received a diagnosis, his parents divorced, his mother lost her

job and his nanny resigned explaining that she hadn’t been educated to care over a child

with special needs. That’s how a new life began both for Faris and his mother.

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Muhamed is a handsome tall eight-years-old second-grader with a wonderful smile and a

little pug nose, dressed fashionably, occasionally spinning his colorful rubber UV bracelet

between his fingers. His great fascinations are flags, maps and traffic signs. The things he

likes, he soon becomes an expert in – as his mother Azra would say. He collects EURO

2012 football stickers and knows every single detail about football games, players, rules or

stadiums. His expertise and a complex academic language makes him look like a little

professor, more knowledgeable and mature than his peers. He also loves babies and

animals, cuddling them and caring for them.

His younger brother Ali, a cheerful, lovable and warm-hearted boy, is his best friend – they

play together and Ali joins him and copies him in his activities and interests. Occasionally,

he asks difficult questions (for example why Bosnia isn’t a state member of EU) to his

parents’ astonishment and bewilderment. In the morning he goes to a nearby mainstream

school. In the afternoon he does his homework, plays with his brother and goes to a park.

In the evening, the family enjoys communal leisure activities. Due to the business

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obligations of Muhamed’s father, they moved several times, finally settling down in

Sarajevo two years ago.

Although his speech was peculiar and he was quite hyperactive in his early childhood, the

family didn’t see any reasons to visit a doctor. It was after he had started attending a

kindergarten that they received a phone call from the headmaster saying that the school

was not equipped with resources for children with special needs. Although they needed

lots of time to recover after the shock, Azra and her husband Ibrahim, started a long

diagnostic journey. Muhamed was diagnosed with Asperger’s syndrome at the age of four.

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Although my volunteering with children with autism had inspired me and prepared me to a

certain degree for my fieldwork experience, the moment I gained thrust of the families and

pondered deeper in their everyday lives, I was actually struck by the finding that there was

so much bodily interaction going on, mediated by different senses, but predominantly by

touch. During my fieldwork, I realized that children with autism are embodied subjects

who touch, smell, hear, see and move - through their senses they experience and resonate

with their environment and their environment experiences them, too. Whether their actions

would be understood as socially meaningful depended on the readiness of surrounding

neurotypical people to “broaden” their definition of social interaction to include alternative

ways of communication and affection exchange, such as touching, cuddling, hugging,

dancing together, jumping together, singing together, listening to music, admiring

children’s art projects, sharing a delicious lunch, or just being together in the same room,

feeling each other’s warmness, odor and presence.

I conducted my fieldwork bearing in mind Merleau-Ponty’s (2002a, 2002b) notion that the

body is the subject of perception: it is through senses that our environment is experienced,

given meaning and enacted upon. Although for me, as a neurotypical person, it was not

possible to decipher the system of meanings of autistic children’s perception, I could only

interpret what I, as an embodied researcher, felt to be a relationship between children and

their parents, siblings, researcher, caregivers or material environment. In order to maintain

a scientific rigor, I discussed my interpretation with parents or caregivers to comprehend

their meaning of particular bodily acts.

I would like to emphasize that every relationship we make is unique and special – that

applies also to intersubjectivity with autistic children. Although all of my little informants

have been diagnosed within the autistic spectrum, they are first of all playful and happy

children. And they all are very different from each other, in terms of their temperament and

characters, but also in terms of their autistic elements, with their own distinctive and

idiosyncratic ways of relating to the environment. In this sense I refer to Hacking (2009b),

who claims that there is no such entity as “autistic child”. Hacking (2009a, 2009b, 2009c)

advocates against autistic “spectrum”, as a linear form of scientific representation, arguing

for a more complex “multi-dimensional manifold of abilities and limitations” instead

(Hacking 2009a:503). “If you know about one autistic person, you know about one autistic

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person”, recalls Hacking one of the quotes commonly cited in autistic communities

(Hacking 2009b:46).

Before I proceed to presenting my data, I would like to explain theoretical concepts that

served as my principal lens and framework during my fieldwork data collection and

analysis in order to be able to formulate my arguments and answer my research questions

adequately. For a start, I would like to mention the anthropological concept of embodiment

and the phenomenological definition of (embodied) intersubjectivity. Secondly, I will refer

to Hacking’s (2009a, 2009b, 2009c) approach of social interaction between autistic people

and neurotypicals. In addition, I reflect on autistic narratives (autobiographies) to

illuminate peculiarities of autistic body, experience and interaction with the environment.

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Although the body was placed in the center of scholarly interest long ago, the paradigm of

embodiment is relatively new, emerging on the basis of two theoretical frameworks:

phenomenological tradition and Merleau-Ponty’s notion of the embodiment as a domain of

perception, and Bourdieu’s (Bourdieu in Csordas 1990) ideas of habitus and socially

informed body (Csordas 1990). The main premise of embodiment paradigm is breaking the

existing dualities, such as “preobjective and objectified, body-mind, subject-object,

representation and being in the world, semiotics and phenomenology, language and

experience, textuality and embodiment” (Csordas 1994:20).

Since the Enlightenment, scholars in humanities tradition treated the mind and the body as

separate entities: the mind was usually related to cognition (rationality, thinking,

reasoning), while the body was mainly linked to involuntarily actions, being nothing more

than a material site of simple physiological processes. (Blackman 2008:4).

Merleau-Ponty’s phenomenology (2002a,2002b) significantly shatters this dualism:

arguing against Descartes’ notion of the mind as a center of human experience and the

body as an object, Merleau-Ponty (2002a, 2002b) claims that it is actually the body that

experiences the world by perceiving phenomenal objects through its senses. Perception

begins in the body and ends in objects, thus constituting human experience - the body is

the subject, a mindful body, whose intentionality gives meaning to what is perceived and

organizes experience.

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According to Csordas, embodiment is “a methodological standpoint in which bodily

experience is understood to be the existential ground of culture and self, and therefore a

valuable starting point for their analysis”(Csordas 1994:269).

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The phenomenological notion of intersubjectivity goes beyond empathy, mutual

understanding and shared experience to include bodily dimension, language and material

environment/space. Jackson (1998) emphasizes that intersubjectivity is not only possible

by employing language and dialogue, but also through the body itself. Here he refers to

Merleay-Ponty’s notion that intersubjectivity is “lived as intercorporeity and through the

five senses as introceptivity” (Merleau-Ponty 1968:114-115 cited in Jackson 1998). On the

basis of philosophy of Heidegger and Merleau-Ponty, Jackson (1998) goes one step further

claiming that “Being is conceived (…) as Being-in-the-world – a domain of inter-est

(inter-existance) and intercorporeity that lies between people: a field of inter-experience,

inter-action and inter-locution”(Jackson 1998:3, emphasis in original). Duranti (2010)

advocates for re-interpretation of the foundational works of Husserl, where

intersubjectivity is approached in a wider sense and ranges from the “acts in which one is

minimally aware of the presence of an Other to acts in which one actively works at making

sure that the Other and the Self are perceptually, conceptually and practically coordinated

around a particular task”(Duranti 2010:13). Moreover, Duranti (2010) underlines the lack

of precision regarding definition of social interaction and communication (whether

interaction is necessary constituent of communication and vice versa), emphasizing

intersubjectivity not as a product, but as a precondition for the possibility of

communication. Although language (and other semiotic faculty) is an important part of

intersubjectivity, “the absence of language does not mean that communication is not

happening”(Duranti 2010:2). Duranti (2010) highlights the phenomenological notion of

intersubjectivity as a foundation of human experience and meaning assignment.

In the interesting and insightful book “Intersubjectivity: The Fabric of Social Becoming”,

Crossley (1996) analyzes the work of philosophers and social scientists concerned with the

complex and multifaceted concept of intersubjectivity, primarily Merleau-Ponty,

Wittgenstein, Mead, Schutz and Habermas, as well as those scholars who layd the

foundations for their theorizing (Husserl, Buber and Hegel) pointing out the necessity to

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approach individual identities through their membership in the society because “our

actions and thoughts aren’t reducible to us alone. They are moves in a game, which has

many players, responses to a call to action which is expressed in every gesture of the

other”(Crossley 1996:173). Furthermore, Crossley (1996) emphasizes embodiment as an

essential constituent of intersubjectivity.

Illustrating the flux of energy in human interaction during an act of spiritual healing and in

everyday etiquette, Csordas (2008) masterly explains “a conceptual progression from

interaction as inherently meaningful to intersubjectivity, and from intersubjectivity as the

co-presence of alter egos to intercorporeality” (Csordas 2008:110). Advocating against the

idea of intersubjectivity as an “abstract relation between two mental entities”, while in the

same time employing Merleau-Ponty’s notion of carnal language, Csordas (2008) argues

that intersubjectivity is a basic human experience, because “bodies are already situated in

relation to one another” (Csordas 2008:118). Furthermore, bodies are positioned in space

and surrounded by material objects – therefore intersubjective relations do not include only

humans, but also their material environment (Merleau-Ponty 2002a, Merleay-Ponty 2002b,

Crossley 1996).

It was Schutz who brought, Husserl’s ideas on intersubjectivity into the social sciences: by

conjoining Husserl’s notion of “life-world” as a mode of consciousness and “the natural

attitude” as a way of living, he acknowledged the importance of the mundane, everyday,

taken-for-granted life world, where intersubjectivity is not only a philosophical

contemplation, but an irrefutable common-sense reality that could be empirically examined

(Crossley 1996, Costelloe 1996).

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Insightful concepts of philosopher Ian Hacking (2009a, 2009b, 2009c) helped me to

comprehend theoretically social interaction between autistic people and neurotypicals.

Recent raise in the number of self-advocacy groups and autistic communities as well as the

rise of neurodiversity movement, significantly altered the way neurotypical people

experience and interact with autistic people. Most of the self-advocates communicate with

wider public through narratives, published or broadcasted through variety of media:

printed books, Youtube and blog posts, forums and chats.

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According to Hacking (2009a, 2009b) the recent development of autism fiction, as a novel

form of literary genre (both documentary and fictional) gives an important insight in

previously unknown autistic experience. Novels have been written either by

parents/caregivers or autistic people themselves4, providing new language for autistic

experiences

helping to bring into being an entire mode of discourse, cementing ways in which we

have recently begun to talk, and will talk, about autism. It is developing a language, or,

if you will, a new language game, one that is being created before our eyes and ears.

This speech is, in turn, creating or extending a way for very unusual people— namely,

autistic ones—to be, to exist, to live (Hacking 2009a:501).

McGeer (2009) argues that there are two interpretations of Ian Hacking’s approach to the

autistic genre: the one more “informative” that gives an “emic” perspective on autistic

experiences influencing thus the way neurotypicals relate to autistic people and another,

more controversial, “transformative” where autistic experience itself has been shaped by

developing a new discourse and a public image.

Criticizing the widely used Theory of Mind and merging theoretical frameworks of

developmental psychologist Lev Vygotsky5 and Gestalt therapist Wolfgang Köhler

6,

Hacking (2009a, 2009b, 2009c) hypothesizes that social interaction in children with autism

can be approached by seeing them as “not-Vygotskyan” and “non-Kohlerian” (Hacking

2009a:504-505). According to Hacking (2009a), children with autism lack Köhler’s

phenomenon (the ability to recognize people’s intentions and feelings on the basis of

bodily expressions and movements) not because they lack a Theory of Mind, but because

they didn’t experience Vygotskyan process of socialization – internalizing relationships,

due to their innate difference in interaction to surrounding neurotypicals. However,

Hacking (2009a) warns to use his hypothesis with caution in order to avoid essentialization

and generalization.

Furthermore, Hacking (2009b) calls for special precaution in the use of the “alien”

metaphor to describe autistic experiences as different to those of neurotypicals, because it

also is leading to essentialization. This metaphor originates from Temple Grandin’s quote

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!4 Autistic autobiographies are popularly called “autie-biographies”- a term coined by autistic self-advocate

Donna Williams (Hacking 2009a:499) 5 Vygotsky hypothesized that as children grow up, they develop social skills internalizing those that they

have with family members and peers making thus a concept of social relationship that is used later in their

life as a model (Hacking 2009a) 6 Kohler’s phenomenon is an ability to “see” people’s feelings and intentions on their appearance, behavior

and bodily movements (Hacking 2009a)

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“Much of the time I feel like an anthropologist on Mars”, and was used later by a

neurologist Oliver Sachs as the title of an essay (Hacking 2009b:44).

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Focusing on language delay and behavior, it seems that the body in people with autism has

been largely neglected, although it has been manipulated and enacted upon through

different treatments (from behavioral treatments to detoxification of high metals). Children

and adults with autism are not disembodied beings as they are usually portrayed in

academic and popular literature. Popular language represents children with autism using

metaphors where the body is a “fortress” or a “shell” – an impenetrable barrier that

imprisons a child (Solomon 2010b:148, Murray 2012). The cognitive paradigm explains

the mind in terms of “hard-wired” computer that processes information depending on how

its software has been programmed. Therefore, it is not surprising that in the high

technology era, high-functioning people with autism or Asperger syndrome (on the basis of

their unusual analytical skills and obsessions with machines) are symbolically represented

in popular discourse and media as “artificial intelligence creatures” or “computer

geeks”(Nadesan 2005:130).

All of these metaphors reinforce stereotypes of children not only as asocial but also as

“disconnected” beings, their body either a mechanical robot or a stone fortress, not a lived

body that senses, moves, feels – the body that experiences.

On the other hand, autobiographic narratives revealing lived experience of autistic people

often emphasize peculiar bodily dispositions or sensory experience with the surrounding

world (Williams 1998, Grandin 1995, Grandin 2005).

In biomedical literature, different sensory perceptions have been described as

“abnormalities” in sensory processing that could be associated with the diagnosis of

autism, and different therapeutic measures have been proposed (Baranek et al 2006,

Dawson and Watling 2000). In addition, specific postures or movements have been

assigned to stereotypical behavior of people with autism, while an array of therapeutic

approaches has been created in order to diminish or eradicate them (Sinclair 2005 in

Bagatell 2010).

On the other hand, autistic narratives highlight the peculiarities of the lived autistic body

and the way environment is perceived and experienced.

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Describing her distinctive childhood sensory experience, autistic self-advocate Donna

Williams writes in her book “Autism and Sensing”(1998):

In my early to mid childhood, I would hold what was otherwise a comb, but perceive a

flat, solid form that could be scrapped with teeth and into which a very fine indention

could sometimes be made. I would perceive it not by its functional purpose, but by its

sensory one. It was a “rih-rih” sounding instrument that would make this sound when

run across my teeth. I was living, at least a good part of time, in the sensory. What were

known as safety pins were solid, difficult to impact upon springy, short, lengthy of

substance that could bend and would make a tingly sensation when chewed or a

delicate, teasing, tunkle noise when quantities of them were shaken (preferably stung

together and easy to manipulate as a collective whole next to the ear). What were

known as a patent leather shoes were black, smooth, soft pliable reflective and lickable

surfaces, which would give way under impact of teeth fairly easily to leave

indentations. A chandelier would become a collective of interacting, seemingly playful

sparks of color, the image of which would trigger the associated sense of the chink-

chink sound that would be made in the smooth hard (glass) pieces from which the

colors emanated were touched together. Recently, having moved out of this sensory, I

looked up at a hinge overhead chandelier and remembered the drug-like addictive effect

such an experience once had on me. When asked about it, I recalled experiences like it

as a “merging with God” because I would resonate with the sensory nature of the object

with such an absolute purity and loss of self that it was like an overwhelming passion

into which you merge and become part of the beauty itself. It was the ultimate

belonging and “company”. The feeling was completely compelling and addictive and by

comparison the call of the world of interpretation seemed pale, weak, insignificant,

foreign and of little reward (Williams 1998:14-15).

On the other hand, Dawn Eddings-Prince (2010), an anthropologist with autism, describes

her bodily experience and interaction with environment as: ”I don’t have a good sense of

where I start and end and where the things around me have boundaries (…) I inhabit this

living world with everything feeling like an extension of myself and with myself as an

extension around me”(Eddings-Prince 2010:57)

Autistic self-advocate Amanda Baggs published a video on YouTube called “In my

language” in 2007. In the first part of the video, Baggs (2007) is recorded in her room:

singing, hand flapping, rubbing the wall and surface of her computer, spinning rosary,

tapping and rinsing different objects, spinning a closet handle, rustling a piece of paper,

touching and rinsing her face on the book pages, smelling it, then touching a stream of

water – all kind of things that are usually regarded as “purposeless” by non-autistic people.

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Second part of the movie provides an explanation provided by facilitated communication

device:

The previous video was in my native language. Many people have assumed that when I

talk about this being my language that means that each part of the video must have

particular symbolic message within it designed for human mind to interpret. But my

language is now about designing words or even visual symbols for people to interpret. It

is about being in a constant conversation with every aspect of my environment, reacting

physically to all parts of my surroundings. In this part of the video the water does not

symbolize anything. I am just interacting with the water as the water interacts with me.

Far from being purposeless, the way that I move is an ongoing response to what is

around me. Ironically, the way that I move when responding to everything around me is

described as “being in a world of my own”, whereas if I interact with a much more

limited part of my surroundings, people claim that I am “opening up to true interaction

with the world”. They judge my existence, awareness and personhood on which of a

tiny and limited part of the world I appear to be reacting to. The way I naturally think

and respond to things looks and feels so different from standard concepts or even

visualization that some people do not consider it thought at all, but it is a way of

thinking in its own right (…) I can sing along with what is around me. It is only when I

type something in your language that you refer to me as having communication. I smell

things. I listen to things. I feel things. I taste things. I look at things. (Baggs 2007)

Therefore, every research performed with autistic people, must acknowledge and respect

specificities of perception and idiosyncrasy of autistic experience. Moreover, conducting

my research with autistic children I kept in mind phenomenological definition of

intersubjectivity, where not only the body (and its sensory experiences) play crucial role,

but also the material objects and space/environment children and their families inhabit.

! %#!

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The phenomenological notion of intersubjectivity recognizes the importance of the

lifeworlds where relationships between people are understood in the mundane context of

everyday life that is usually taken for granted. (Jackson 1998). Since a person and the place

he or she inhabits are (opposite to Cartesian separation) an indivisible whole, location is

important part of the lifeworlds (Casey 1996). Casey argues that “lived bodies belong to

places and help constitute them (…) by the same token, however places belong to the lived

bodies and depend on them”(Casey 1996:24). Because humans are embodied beings,

claims Casey, they are intimately connected to the surrounding world:

“as places gather bodies in their midst in deeply enculturated ways, so cultures conjoin

bodies in concrete circumstances of emplacement” (Casey 1996:46). Therefore, in order to

study intersubjectivity, one must take into account specificities of the context of the study

place – in my case it is Sarajevo, a capital of Bosnia and Herzegovina, a small country

situated in the central part of Balkan Peninsula.

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Sarajevo is not a beautiful city. But there is certainly something in its appearance that

makes guests come back over again and displaced Sarajevans incurably homesick. Its

houses, irregular and lopsided, built in one historical era and refurbished in another, hang

askew on the mountain slopes that surround a foggy valley. Its streets are narrow and

winding with irregular paving and small pools of water when it rains. Its river, streaming

silently below the charming bridges, is meager, shallow and stained by drainage and waste

that seep from the underground sewers. In winter, cold breezes from the nearby mountains

scratches your cheeks and fingertips, making you pull your chin in the collar of your jacket

and hands deeper in your pockets when you walk past the traditional artisan shops. When

you march Titova Street among the restaurants and modern designer stores, your feet soon

became soaked as the snow melts on the pavement mixing with soot, dust and dirt. In the

summer, incandescent facades of ancient Ottoman bazar, charming Secession houses and

greyish socialistic skyscrapers emit heat, so you have to hide behind the blinds until the

evening. Nevertheless, what strikes the most in Sarajevo is not its landscape, but its people:

walking, talking, drinking coffee, laughing, gathering, touching, hugging, competing,

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fighting, gossiping, then smiling again, singing, chatting, contemplating over the daily

politics in the crowded and smoky street cafes. The city is a site of vivid and intensive

social interaction. There is something appealing, but hardly comprehensible for foreign

people – everyday life in Sarajevo is imbued with deep political and historical meaning,

betwixt and between peace and violence, prosperity and destruction, modernity and

tradition, capitalism and socialism, East and West, rurality and urbanity.

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Sarajevo is situated in the Sarajevo valley, on the banks of river Miljacka and surrounded

by mountains: Bjelašnica and Igman on southwest and Trebević on southeast. It is the main

administrative, educational and cultural center in Bosnia and Herzegovina, with

approximately 500 000 citizens in the broader region (Grad Sarajevo 2012). In popular

media and literature, the city is usually represented as the site of the assassination of the

Habsburg Archduke Franz Ferdinand that directly preceded First World War, the

hospitable host of the Winter Olympic Games in 1984, or the victim of brutal siege that

begun in 1992 and lasted until 1995.

Sarajevo was officially founded after the Ottoman conquest in the 15th

century as an

unfortified settlement on the banks of river Miljacka, surrounded by the mountains. In

1878, Austria-Hungarian Monarchy annexed territory of Bosnia. For the city, it was a

period of renaissance: intensive architectural activities, cultural prosperity, novel social

practices, political organization, and educational system (Donia 2006).

Since the end of World War II, Bosnia and Herzegovina was part of Socialistic Federal

Republic of Yugoslavia. The fall of the Berlin wall and communist regime in 1989

announced significant historical and political changes to the region. The disintegration of

the Yugoslav Federation and subsequent establishment of several independent states was a

painful process, resulting in serious armed conflict. In April 1992, Bosnian Serbs, with the

help of Slobodan!Milosevic’s regime in Belgrade, officers, soldiers and weaponry of

Yugoslav People’s Army and troops of paramilitary formations, besieged Sarajevo, putting

the artillery on the surrounding mountains, keeping the city in isolation from the external

world for the next four years, shelling the residential areas, cultural objects (especially

those that symbolized city), business buildings, schools, libraries, museums and hospitals

on purpose everyday. UNPROFOR soldiers were sent by the international community to

! %%!

protect civilians, but most of them were only bystanders of the violence, distributing

humanitarian aid to the people in shortage of food, water and electricity. Civilians and

children were shot on the streets, on the market, in the line at bakery, in the line for water

supply, in the hospitals (Donia 2006). The aggression on Bosnia resulted not only in

hundreds of thousands of deaths, significant displacement and devastated homes and

infrastructure, but also in establishment of free-market economical system, novel social

stratification and a high rate of unemployment (Malcolm 1996, Štiks 2006).

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Several anthropological studies have been done in Sarajevo, most of them concentrating on

the ways war affected ethnical and national identities of ordinary local people, examining

work of different international organizations, or following refugees return. Some of the

findings are summarized in the collection of essays “The New Bosnian Mosaic: Identities,

Memoires and Moral Claims in Post-war Bosnia” (2007), edited by Xavier Bougarel,

Elissa Helms and Ger Duijzings et al, focusing not only on ethnical tensions, but also on

questions “beyond ethnicity”: on the ways new categories of normality and difference,

rurality and urbanity or gender have been constructed and given meaning throughout the

war and post-war period (Bougarel et al 2007:14).

In the book “War Within: Everyday Life in Sarajevo Under Siege”(2000), Ivana Maček, on

the basis of her extensive and dangerous fieldwork in besieged Sarajevo, examines

everyday life of Sarajevans and the ways they negotiated the meaning of normality in the

circumstances of continuous life danger, shortage of basic supplies (food, water,

electricity, gas), abandonment of homes, and dependence on scarce international

humanitarian aid. Maček(2000) argues that in order to cope with a sudden disruption and

to gain a sense of control over their lives, Sarajevans kept preserving their pre-war moral

norms and daily routines. Maček (2000) stresses the importance of maintenance of social

interaction and solidarity in the city as the precondition for survival.

In the book “Sarajevo: A Bosnian Kaleidoscope” (2010), Fran Markowitz explores the way

Sarajevans navigate their everyday lives at the beginning of the new millenium, their

quotidional practices and personal and group identities in the larger context of ethnic

divisions, neocolonialism and global politics. Although significantly shaken by recent

historical events, Sarajevo is still a cosmopolitan city, with multicultural diversity and

! %&!

pluralism. The Author emphasizes how some of the social practices, such as šetanje

(walking) articulate connections between “their lived bodies and the city they inhabit”

(Markowitz 2010:47)

Investigating post-war life in Sarajevo, Stefansson (2007) concludes that demographical

changes in the city caused by war (departure of large number of Sarajevans and influx of

displaced people) play an important role in constructing new categories of normalcy,

causing tensions between urban, “culture” and “pro-European” people and those who are

classified as “rural” and “backward”.

Bougarel et al (2007) highlights another important social actor in the post-war Bosnia (and

especially Sarajevo as its administrative center) - the continuous presence of the

international community in the form of different governmental and nongovernmental

organizations of developmental sector, bringing novel social practices and different forms

of political activism, influencing thus significantly local cultural and social dynamics.

Eastmond (2006) argues that although many displaced Bosnian people gained dual

citizenship and established their homes abroad, they actually constantly influence life in

their home country by forming strong diaspora communities, living trans-nationally,

treasuring bonds with family, sending remittances and bringing in foreign cultural

elements. Sorabji (2008) stresses the cultural importance of social bonding, illustrating it

with the explanation of the concept of neighborhood, komšiluk, as the nexus of social

interaction, moral values and tolerance nurturing.

In summary, anthropological studies done in Sarajevo highlight several important findings:

political instability with ethnic tensions and economic uncertainty; transnational life of

displaced citizens, the presence of an international community and consequent cultural

hybridization; novel constructions of categories of normalcy and difference due to the

recent historical events, and the cultural significance of social interaction and social

networking. All of the these circumstances significantly influence not only interpersonal

relationships, but also the way categories of disability and difference (including autism) are

constructed: ethnic tensions are embedded in everyday life leading to severe frustration,

the health system has few resources and doesn’t function well and educational facilities

(especially those aimed for children with disabilities) are mainly inadequate and

insufficient.

! %'!

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A four-year long siege caused tens of thousands Sarajevans to flee abroad, settling down

all over the world, leading a transnational life or returning to Bosnia at the beginning of the

new millennium. Young people had an opportunity to study at prestigious universities,

gain experience in different fields, bringing professional excellence and diversity to their

home country and challenging traditional cultural norms. Furthermore, as Bougarel et al

(2007) argue, the difference between Bosnia and other post-socialist countries is the

continuous presence of international workers, causing significant social and political

changes due to the mutual “hybridization” of practices and representational forms. One of

the major aspects of international presence was gradual development of civil sector, with

an enormous number of advocacy NGOs founded. Treatment and care of autism was one

of the domains significantly influenced by this peculiar atmosphere, making possible the

birth of the first social movements, the circulation of information between parents and

caretakers and the provision of specialized educational services.

“SOS autizam”, the first social movement aimed at advocacy of children with autism was

established and officially registered at the Ministry of Justice on 17.02.2006, with the

mission to help and promote rights of children with autism. The first task of the

recruitment of parents was successfully accomplished with the kind help of staff at the

Child Department of Psychiatry Hospital University of Sarajevo, at that time the institution

responsible for diagnosing children with developmental disorders. Apart from meetings

and discussions about political issues, lodging in several different places ranging from

classrooms of a primary school, the renewed first floor of an abandoned cinema, a dark and

damp cellar of a local church to the cozy living room in Association of blind persons, “SOS

Autizam” organized several different activities: workshops for children, group excursions

to nature, expert lectures, public actions for awareness raising, home visits, media

coverage, etc (Personal archive 2012). Enthusiastic and studious work resulted in the

gradual increase of parental assertiveness and consequent strengthening of the

organisation’s leadership in advocacy. The Association was renamed into URDAS-

“Udruženje roditelja djece I odraslih osoba u autističnom spektru” (Association of Parents

of Children and Adults with Autism) to encompass adults with autism, re-registered on the

level of Canton Sarajevo, due to administrative problems and from 2007 managed

completely by parents (URDAS 2012).

According to Veselinka Moric, mother activist and current president of URDAS, several

! %(!

problems have been identified: the extremely complicated, long and exhausting diagnostic

protocol, the lack of educational facilities and the significant stigmatization in the

community. Until 2009/2010, only few children with autism were included in mainstream

kindergartens and schools, while most of them attended schools for special education –

Zavod “Mjedenica” and Center “Vladimir Nazor”, with no specific programs developed

for autism. As a major problem, Moric emphasizes misconceptions such as beliefs that

autism in contagious, or assumptions that autistic children are aggressive and do not have

feelings and empathy. Lack of knowledge leads to lack of social interaction with children

and families and their further isolation from mainstream society. “Parents teach their

children social norms – what is “normal” and what is not “normal”. But, how can they get

to know autistic children at all, when they do not meet them, interact with them on

everyday basis? Therefore through our actions, we are trying to make our children

“visible” in the society.” says Moric (Moric 2012, personal conversation).

As a result of intensive political lobbying and a fruitful collaboration with Nirvana

Pistoljevic, a young scientist of Bosnian origin and US education, URDAS has started the

first educational program specially aimed at children with autism in 2010 (EDUS 2012).

Due to political tensions and ideological disagreement, Nirvana Pištoljević and other

experts involved in the implementation of the program, separated from URDAS

establishing a new non-profit non-governmental organization EDUS- Edukacija za sve

(Education for All). They were followed by a significant number of parental activists.

Classroom for children with autism has been spatially integrated into a public special

school Zavod “Mjedenica” (Pištoljević 2012, personal conversation). Pištoljević highlights

several major obstacles: an old-fashioned and medicalised educational system, lack of

knowledge and awareness and insufficient support by government:

The level of our special education system in Bosnia is very low. Generally human rights

of children with special needs are significantly threatened: children are severely

marginalized. Unfortunately, most of the children are left alone at their homes.

Although school education is obligatory according to the law, schools do not want to

accept these children. Mostly, it is due to scarce resources: lack of staff or insufficient

preparation of the teachers (due to the poor practical skills acquired at university). (…)

By replicating CABAS schooling system, we are trying not only to establish a novel

educational approach, but also to organize a multidisciplinary and overall educational

system, with individually designed programs for children, tailored specifically

according to children’s needs. (…) Unfortunately, we face significant obstruction in

application of this program: it seems that the government and most of the staff would

! %)!

like to maintain the old Russian model of special education, where children attend

school only for two hours per day (which is too little for children with special needs),

not willing to adjust to the new advancements – this has profound consequences in

terms of academic improvements: no measurements, no feedback, no accountability

whatsoever. (…) And another major issue here is that they (teachers) mostly hold a

medical model – they are so attached to medical diagnosis, still using a medical model

in schools, their classroom looks like hospital settings, teachers are wearing white coats!

And a teacher is not supposed to be scary, but to be friendly, to touch the kid, to hug the

kid, love the kid. But these children are not diseased; they just have special learning

needs. The medical field has nothing to do with the field of disability! It is just about a

learning style! (Nirvana Pištoljević, interview)

Udruženje za podršku djeci i roditeljima “Budućnost” (the Association for educational

support for children and parents “Future”) is the third non-governmental association in

Sarajevo that has incorporated autism advocacy into its mission. The Association was

founded in 2009 and its main goal is to help building healthy and stimulatory environment

for learning in order to prepare both parents and children for schooling activities.

According to its founder, speech therapist Dževida Sulejmanović, the association

encourages educational inclusion for children with disabilities, with special attention to

developmental disorders. Providing behavioral treatment for children with autism, helps

them integrate into mainstream kindergartens and classrooms. Several parent activists are

included into organizational activities (Sulejmanović 2012, personal conversation).

However, many parents have decided to stay “out of politics”, employing home-based

programs, such as Son-Rise and relying on consultations provided via Internet or annual

visits by international supervisors. “I do contact other parents regularly, meet with them or

exchange experiences. However, I do not want to be member of any of the organizations –

other parents try so hard to push you to one kind of treatment or another, not giving you

enough space for your own opinions or decisions”, said one of the mothers in my study.

Lejla Somun-Krupalija is a senior research officer at Human Rights Center University of

Sarajevo, and mother of a child with autism with a long experience in disability activism.

“In Bosnia and Herzegovina, autism is not even recognized as disability!” said Lejla

Somun-Krupalija emphasizing the serious consequences this has on everyday life of

children and parents (especially single parents). The government thus denies resources

they desperately need, such as adequate educational services, financial help or paid

personal assistants. Another problem, in her opinion, is the lack of knowledge about autism

! %*!

leading to stigmatization and discrimination not only by ordinary people, but also among

experts and policy makers. (Somun-Krupalija 2012, personal conversation)

Nevertheless, the government has recently started recognizing the necessity of a better

diagnostic protocol. In May 2012, the Outpatient Clinic for Autism was officially opened

at the Pediatric Hospital University of Sarajevo, under supervision of a child neurologist,

dr Smail Zubčević. Dr Zubčević also has been appointed chairman of National Assembly

for Autism, established in 2011 by Federal Ministry of Health.

The outpatient clinic employs an interdisciplinary team of child neurologists, psychologists

and social workers with occasional visits of experts in other specialties, such as

neuroradiology, gastroenterology, audiology etc. The aim is to make diagnostic procedures

shorter, less complicated and more efficient in order to provide early diagnosis and make

room for early intervention (Zubčević 2012, personal conversation)

Having in mind phenomenological definition of intersubjectivity, in order to study

personal relationships and everyday lifeworlds of children with autism, it is necessary to

examine the place they live in. Sarajevo has a specific historical, economical and political

background that largely influences everyday life of people. Due to ethnical tensions,

economical uncertainty, insufficient health and educational system, and contested

categories of normalcy and difference that as a consequence have significant

stigmatization, people with disabilities and their families face many problems.

Furthermore, as Sarajevo is the place of intensive social interaction, life with autism

represents a challenge both for children and their parents.

! &+!

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Children with autism are described in literature (almost by definition) as disembodied

beings, avoiding touch and physical contact, or using only certain forms of touch, such as

striking, pinching or pulling to express frustration and negative feelings (Siegel 1996,

Volkmar 2008, Tanguay 2010). Touching, rinsing, rubbing, fiddling, brushing, striking,

fingering, twiddling or licking are usually regarded not as socially meaningful acts, but as

purposeless and unwanted stereotypic movements. However, my findings suggest that

these forms of touch and movements, together with familiar forms such as hugging,

cuddling or tickling play a role in mediating the personal relationships of some children

with autism. Since touch is expressed though motion, it is not possible to engage in touch

without including kinesthesia. Other senses, such as smell, hearing and vision also have

role in the behavior of children with autism, but due to word and time limitations I will not

explain these in detail.

Observing the social interactions of six children with autism and their parents, siblings, and

caregivers in an everyday setting, I found that many of the children use touch as a socially

meaningful act: to establish contact, communicate feelings (such as love, amiability, fear)

or simply to maintain a connection with their environment. Since the significance of this

action is distinct for each child, it is not surprising that the meaning of the movements are

usually first understood by those people who spend the most time with the child, such as

parents or caregivers.

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Touch is the first sense developed in a human fetus. It is the first “language” used to

experience and communicate with an external world—the uterus, a mother’s tissues during

birth, the hands of a midwife or obstetrician. Newborns and infants communicate with the

mother through touch during breastfeeding, diaper changing, bathing, cuddling, petting,

etc. Over time, touching is replaced with verbal language, and becomes a “second-order

sense” in most Western countries (Barnet 1972). In The Book of Touch (2005) edited by

Constance Classen, authors highlight how touch (and sensory experience in general), have

lost importance in Western societies due to a cultural representation of touch as

“animalistic” and “lower” (together with smell and taste). Western culture is

! &"!

predominantly visual and textual, while a tactile culture has been largely unrecognized in

the academic world. “Like the air we breathe, it [touch] has been taken for granted as a

fundamental fact of life, a medium for the production of meaningful acts, rather than

meaningful in itself” (Classen 2005:2). Classen et al. illuminate how the sense of touch has

been socially and historically constructed, not only among cultures, but also within gender,

class and healthcare, explaining the role of touch in communication, nursing or for social

control. One of the chapters in The Book of Touch, written by autistic scholar Temple

Grandin, is devoted to the importance of touch for autistic persons. Grandin (2005)

describes her childhood experiences:

I always hated to be hugged. I wanted to experience the good feeling of being hugged,

but it was just too overwhelming. It was like a great, all-engulfing tidal wave of

stimulation, and I reacted like a wild animal. Being touched triggered flight; it flipped

my circuit breaker. I was overloaded and would have to escape, often by jerking away

suddenly (Grandin 2005:318).

However, Grandin (2005) writes how she craved for deep pressured touch at the same time

that she was rejecting being hugged. Therefore, after seeing cattle squeeze through a chute,

she designed “the squeeze machine”, a device that could be used when she wanted to feel

pressure. Everyday activities, such as dressing or hair washing were also difficult tactile

experiences for Grandin and required time for her to adapt at (2005). Grandin (2005) also

explains how touch can be the most reliable sense for acquiring information about the

surrounding environment. She refers to an autistic woman, Therese Joliffe, who

experienced the world by touching it with her fingers in the way blind people do.

Touch is not only an issue for children and adults with autism. Writing about her research

in a pediatric oncology department in South Africa, Blake (2011) emphasizes how her

research has been significantly influenced by the omnipresent use of touch by children

with cancer. Although originally Blake intended to explore the children’s narratives, her

finding that touch played an important role in mediating interaction with children, being

both comforting and pain-relieving, actually inspired her to change the course of the study

and explore the experience and meaning of the touch. Blake points out the lack of attention

that has been given to touch in anthropology, suggesting that touch is an important social

practice that alters the dynamics between researcher and participants and provides new

knowledge through embodied actions.

! &#!

Exploring experiences and meanings of touch between parents and children with autism,

Cullen and Barllow (2002) argue that Touch Therapy, a form of alternative therapy based

on a massage and tactile stimulation, not only benefits children in terms of anxiety relief

and relaxation, but also enhances bonding between parents and children and provides a

mode of alternative communication.

In a following chapter, I present my fieldwork excerpts and comment on specific moments

of bodily interaction, which are predominantly mediated by touch between children with

autism and their neurotypical family members, volunteers and the anthropologist. Later, I

discuss my findings using theoretical concepts. It is important to note that not all of the

children in my study used touch as a dominant sense of experience and bonding. Also, the

use of touch was distinct for each child, so no common pattern served as a model in this

study.

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Among the children in my study, Ogi had the most prominently expressed sense of touch.

He used touch to communicate with the world: by touching he explored his environment,

expressed his feelings and bonded with people. Many times while we were sitting on a

floor or on a sofa at Lejla’s home or bench in a park, Ogi was nestling in her lap. He was

usually the one who initiated this contact, but occasionally Lejla took him in her arms

when he was frightened, frustrated or squalling inconsolably. Ogi generally relaxed in in

his mother’s lap, his fragile body leaning on her body, with his cheeks pressed on her

shoulder. Once, when we were in a playroom, Ogi saw a swing hidden in the labyrinth of

equipment, but didn’t know how to reach it. “Do you want us to help you?” asked his

mother. Instead of requesting help, he started crying bitterly. Lejla lifted him, comforting

him tightly in her arms. He stopped crying, leaning on her shoulder, pressing his cheek on

the smooth texture of her leather jacket. The times when Ogi spontaneously came to sit on

his mother’s lap, he sat so that he turned his face to her, touching her chin, cheeks, lips,

nose, eyebrows, and eyelashes with his little fingers, inspecting every detail of her skin,

smiling and cuddling in her arms. These were little moments of love and intimacy for a

mother and son. Lejla felt privileged, as she, his mummy, was the only person in the world

that Ogi would touch in this way.

! &$!

I also used touch to build a bond with Ogi, as seen from the following excerpt from my

fieldnotes:

While we were walking, Ogi stood between Lejla and me, holding our hands with his

little fingers firmly, as afraid not to lose us. From time to time, he would press our

hands on his chest and hang on our forearms, swinging and touching our clenched

fingers with his cheeks. I had an impression that it was not only his hands, but also his

cheeks that he made a contact with. Usually, he said “wooow-wooow”, an unarticulated,

but melodic and joyful sound. It was his expression of joy and the way he entertained

himself. When we were passing by a sweet shop, he stood by the shop window, behind

a small plaster statue of a cook. He smiled at it, touched his face, ears, and a long

smooth white hat, slightly faded and covered by city dust. It was his way to greet the

cook. Since Lejla had to rush, climbing the steep street, I took Ogi in my arms, and

rushed after her. Although he looked very fragile, he was quite heavy and I was almost

breathless, carrying him, sweating all over, my arms aching. However, he seemed very

happy, silent, comfortably positioned on my elbows, hugging me around my neck,

touching my ponytail, pressing his cheek on my shoulder, smiling and looking around.

It is not only that Ogi bonded with people by touching them, he also communicated with

non-human environments tactilely: cars, plants, and horses. He even admired street art with

touch, passing his hand over the colors on uneven wall surfaces:

Ogi suddenly stopped: he saw a parked car, an old and ragged abandoned VW Golf 2.

His eyes sparkled in amusement. He approached it slowly, walked several times around

it, as it was a precious art piece in a museum. He touched the half blown tires on its

wheels, its rusted bumpers, and its broken door handles. Then he pressed his nose and

his cheek to a dirty window, inspecting the interior. This was what he did every time he

saw a car that he liked.

! &%!

Figure 1. Ogi examining a wheel

Ogi, his mother and I went upstairs to a small gallery designed for birthday parties. Ogi

touched all the abandoned tables, small chairs and shiny hat on a huge soft teddy bear.

He even came inside a bar, so he touched all the bottles of fruit juice and mineral water,

packages with candies, spoons, cups, coffee machine. He checked the toilet, too. The

playroom got pretty crowded, while we were discovering the space. Children were

running all around. The melody of popular children’s songs came from the

loudspeakers. Although I was afraid how Ogi would have reacted in the loud room, with

neon lights and colorful colors, he seemed quite calm in the first half an hour. He didn’t

mind the presence of other children on slides and trampoline. Cildren were touching,

pushing, twitching and pinching each other. Ogi was pushed several times and one boy

even stepped on him while he was lying with his cheek touching the floor. However,

instead of reacting back in the same manner, he simply touched other children gently

smiling and changed his route.

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While Ogi expressed his affection with a light, shy, barely perceptible touch, Dario’s touch

was much stronger, daring and self-confident. Dario didn’t hesitate to ask for a hug or to

touch unknown people in the street. I had the impression that hugging sincerely made him

happy as he usually smiled or even laughed, eyes sparkling with joy, and blond hair

bouncing up and down in amusement. When he hugged me for the first time, Ana and

Janko said in one voice “Oh, it seems that he likes you a lot!” However, they expressed

slight skepticism about the extent to which his hugging was a purposeful exchange of

affection or just another of his stereotypes. The last evening of my fieldwork at their home,

! &&!

he was especially keen on hugging me. He sat in my lap, hugging me endlessly, touching

my hair, laughing, saying: “Kiss-kiss”. His father filmed the two of us interacting.

Figure 2. Dario and researcher interacting

Dario’s contagious laughter cheered all of us. When I got up to go, for the first time during

my fieldwork he waved “good-bye” to me. The following fieldwork notes richly illustrate

Dario’s bodily interaction with his parents, volunteers, unknown passers-by and me:

It was a day with special offers in the DP supermarket, so Ana proposed going out for

her weekly shopping at a store situated along Dario’s everyday walking route. Changing

a route meant frustration both for Dario and his parents, frequently leading to a temper

tantrum in the middle of the street. Ana and I were talking about his routines while

Dario was half walking and half running in front of us. From time to time, he stopped

waiting for us, saying “kiss-kiiiisss” – that meant that we had to hug him, cuddle him

for a while and kiss him on his cheek (in Dario’s vocabulary “kiss” referred to

everything that he liked: a kiss, a hug, or chips). Happy with his “dose” of hugging, he

! &'!

continued walking. As he walked, he occasionally bumped into other people while

laughing, although they looked at him angrily. But what was more interesting was that

from time to time, he approached young, beautiful and nicely dressed girls touching

their arms and looking at them with significant interest and smiling. Some of them

reacted by patting him and smiling, but some were really annoyed saying “What an odd

boy!”

“He is so sensual!” said his mother grinning. ”Sometimes I am so afraid of his puberty!

Oh my God, imagine how it would be!”

Sunday is the day when most of the children spend time with their volunteers. When I

came to Ana's home, Tina and Velida, Dario's sympathetic and devoted volunteers, had

already been in the corridor, holding Dario’s hands firmly, preparing for a walk. “He

usually goes by himself when he is with his mother, but we are afraid of vehicles, so we

hold him – and he seems to like it a lot”, they explained. (…) This time our destination

was Vilsonovo šetalište, a four kilometers long promenade on the bank of river

Miljacka, hidden under the shadow of chestnut trees. At the end of the promenade, we

decided to make a short break in the garden of a recently reconstructed hotel. We

ordered three coffees and yoghurt – strawberry ice cream for Dario, which he licked

with pleasure. He was sitting near Velida holding her hand and telling her every two

minutes “kis-kissss”, meaning she had to hug him and kiss him over and over again.

“Oh, he is so cuddly! He is like a soft small teddy bear! Always wants to be hugged and

cuddled!” she said looking at him lovingly.

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A family’s and researcher’s bodies must be sensitive when receiving specific bodily

signifiers from children with autism (usually taken for granted), as well as bringing these

signifiers into their consciousness to decipher and appreciate fragile moments of bonding.

Furthermore, engagement in relationships demands not only awareness, but also openness

in interpretation and a willingness to reciprocate. Sometimes, as seen in the following

fieldnote excerpts, the child’s touching was so subtle and brief that it required a special

bodily awareness to be noticed at all:

Mak and Emil smiled when they saw me, sitting in their baby car seats, wearing a

raincoat with a hood and colorful rubber rain boots. I was talking to Irma about my

studies when I felt a small hand on my face: Emil touched my cheek with his little hand,

then took my hand in his, held it for a while and touched his cheek with my hand,

smiling. I was overwhelmed with joy, interpreting his action as a sign of closeness and

friendship. He accepted me, I thought. Later on, he took my arm, pinched me slightly on

its inner side, than patted it gently, drawing close, smelling my skin and smiling. It

made me feel happy and honored, because this was a gesture he awarded only few

! &(!

people: his brother, mother, teacher and his kindergarten mates Emina, Haris and Sanja.

During my home visits, he used to take my hand, bringing it close to his nose and lips,

touching and smelling it, crawling into my lap, touching my face and hair with his little

fingertips, smiling. This was his way to show closeness. Irma used to watch him

lovingly. “He is so cuddly, isn’t he?” she would say.

Figure 3. Mak and Emil sitting in their armchairs

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Frequently, it is not only touch that mediates interaction—it can be a posture or movement,

too. Philosopher and dancer Maxine Sheets-Johnstone (2009) writes about thinking and

feeling in movement and rediscovering the mindful motion of our body.

As seen from the following excerpts, Faris often communicated emotions through his

idiosyncratic postures:

As I came into Faris’ room, he seemed quite tired, since he had been interacting with

volunteers since early morning. Coming into his room means that I must behave

according to the rules of his program. “To go out, Selma, to go out” he said when I

came in, trying to push me out of his room. It was very warm day and I felt drops of

sweat rolling down my back. Everything that I said or did seemed to irritate him. He

didn’t want to eat his lunch, protesting and spilling it from his bottle. “Soup” he said

grimacing, spitting it out immediately after he sipped a small mouthful. I felt rejected

and helpless, wanting to scream for Maja’s help.

“Go out, go out” he pushed me again. This time Maja came in, wiped spilled food,

rearranged the toys and opened the window. Although it was very warm and wet,

opening the window brought a touch of freshness.

Kai, a playful adolescent golden retriever, recently adopted by Maja, followed her,

waving his tail cheerfully. Faris felt relieved and sat on the windowsill, gazing outside

at Maja’s beautiful garden and road on the hill.

After several minutes, Maja closed the window, took Kai, and left us alone.

! &)!

Faris laid on the colorful comfortable cushions, arranged in a corner, touching their

surface with his hand. I sat next to him. He didn’t want me to talk or sing (I really had a

feeling that my voice irritated him so much!), but he wanted me to be near him—he

leaned on my legs, and put my hand on his back. I tapped him gently and he seemed to

enjoy it a lot, from time to time looking at me with his deep turquoise eyes, smiling.

During my time in his room, he repeated this “game” several times, every time enjoying

it a lot. I offered him his lunch again. This time he ate it at once. Then he sat on the

storage heater again, with his legs stretched on a huge Pilates ball, rolling it. I took

another Pilates ball and sat on it. He put his legs on my lap, and I tickled him on his

feet. He giggled. Then he sat on a Pilates ball, still holding his feet in my lap, his body

stretched, balancing. “You are such an acrobat” I said impressed with postures that he

was able to make. Then we sat on the same ball bouncing, supporting each other by our

backs. He laughed and giggled. I felt that we were friends now. Tomorrow, our

friendship was confirmed: while driving back from the nearby mountain, he put his

head into my lap and fell asleep while I tapped his hair.

Figure 4. Faris having a dinner

Faris expressed his intimate relationship with his mother through touch, as did Ogi and

Dario. This is seen in the following excerpt:

We were sitting in a living room chatting. Maja sat on the sofa, while Faris comfortably

positioned himself on the colorful cushions in the sofa corner, drinking his dinner from

a baby bottle, playing with its rubber tip. He put his feet in Maja’s lap, so she tickled

him and he laughed. Then he put his feet under her blouse, touching her belly. This was

his way of expressing intimacy. Maja said that sometimes (usually when he felt shy or

frightened) he put his head under her blouse, or even his whole body under her skirt.

She thought that he might like tactile stimulation, so she established a gentle massage of

his head and his tiny body as their daily routine—not only that this activity relaxed him,

! &*!

but it also made them “be together”, share affection. Sometimes he craved for some

form of pressure, wanting his mother to sit on him—so Maja invented a game called

“sitting on Faris” without hurting him, making it a kind of theater play. Usually, he

giggled on these occasions, enjoying their interaction.

+)G,5$*-,5F#.*$)1'$-)8F,1G$;)H*$

More than interacting directly as “body to body”, material objects seemed to play role in

mediating intersubjectivity with Muhamed. Sharing his interests and passion for football

stickers, traffic signs and geographical maps, gave me an opportunity to establish a

relationship with him that is illustrated in the following excerpt from my fieldwork. It is

important to emphasize that of all the children in my study, Muhamed had the most

developed language communication.

Muhamed and Ali (brothers) jumped to hug me as I entered their home. Azra was

smiling, welcoming me with her warm gaze. She brought us coffee, juice and sweets –

symbolic and delicious gestures of hospitality and friendliness. The boys were delighted

when I gave them the football stickers I bought. Muhamed brought the album and we all

sat at the dining table, gluing the images in the right places. Muhamed knew the exact

number of stickers he had, and those he missed, the name of every player, the flag of

each country and the capacity of each stadium. Stickers were perfectly alined according

to the printed frame. Each time when Ali put a sticker in place (usually a bit

imperfectly), Muhamed became very frustrated, immediately fixing it.

“Shall we play a game “Children and traffic”?”, asked Ali bringing a box with board,

little cars, little figures of pedestrians, and two cubes: one with numbers and another

with traffic lights. “But, first, you have to know the rules”, Muhamed told me in a

serious voice, extensively explaining regulations governing the game. We started

playing and as the rules were too complicated for me to decipher, I was constantly

losing the game. Muhamed was winning, answering questions about traffic signs with

substantial pleasure (always correctly!), his eyes sparkling with victory. However,

during the play in one moment Ali took priority, his pedestrian figure gradually arriving

at the goal of “eating” Muhamed’s figure. Muhamed suddenly stood up. “If I am

“eaten”, I never play anymore”, he said, departing for his room. Ali and I continued the

game: he was very happy to win, his cheeks blushing with excitement.

“One hundred sixty-four, one hundred sixty-five, one hundred sixty-six…” we heard

Muhamed’s voice counting football stickers.

After a while, he came back to join us at the table. Azra brought us some delicious ice

cream. “I am not playing anymore, but I am supporting Selma. And I will help her with

questions, because she doesn’t know anything about traffic at all”.

“And I support Selma, too”, said Ali eagerly.

! '+!

I felt embarrassed thinking about my (never utilized) driving license. Omar’s pedestrian

was much better positioned than mine, but I tried hard to improve my position. “Go,

Selma, go! Come on, go get five! You have to win! Ain’t you let little Ali win you! Go!

Go!” Muhamed supported me passionately. The final cube was on the board. I lost the

game. “Oh, you…you disappointed me so much!” sighed Muhamed in a manner of a

disillusioned football coach. He left the room again. Ali went to his father’s office to

watch cartoons on Youtube.

Figure 5. Muhamed’s favorite game – “Children and Traffic”

I had a similar impression of the importance of material objects as mediators of

intersubjectivity (as I’d had with Muhamed) by observing the interaction between Dario

and his schoolmates, all of them diagnosed with autism. Although they interacted bodily

with neurotypicals in the room (teacher, teacher assistants and researcher), it seemed that

the interaction among themselves was sensorily mediated. Their interactions were not

always directly body-to-body, but by music, visual arts or cartoons and various objects,

such as CDs, a computer, pencils, or picture books.

Dario had five classmates, four boys and one girl. They were eight or nine years old,

and diagnosed with an autistic spectrum disorder. With exception of Halima, a girl, they

didn’t use words often to express themselves. The classroom was very small, but

comfortable. It was equipped with wooden tables and chairs arranged in a semi-circle in

front of the blackboard. The teacher, Dalila, was young, affectionate and enthusiastic,

with long curly hair and energetic movements. She had two assistants: Tanja and Alma,

! '"!

also young, dynamic and devoted. As I entered the classroom, Dario was sitting at his

place, leaning on the desk in front of him, spinning a CD under the light so that it made

spectrum of rainbow colors on the surface. Vedad ate a chocolate croissant, while

flipping through a picture book. Halima also browsed her picture book, while swaying

on her chair back and forth, back and forth, singing. Adi lolled in his chair in front of a

computer, watching cartoons. Nermin was running along the narrow corridor behind the

chairs, stopping every now and then at the window, laughing.

“It is a “happy hour” today—we have leisure activities, since it is the last day of this

school year” explained Dalila.

Dario took a biscuit, yawning. He was sleepy, but seemed to be in a very good mood.

He kept spinning his CD, scratching the surface of the desk producing a strange

piercing sound that gave me goose pimples. Nermin laughed as he heard the sound,

stopping at Dario’s back, touching his shoulder. Dario started scratching more

intensively.

“If we break this CD Dario, then we shall not be able to listen to your favorite music”,

said Alma, taking his CD and approaching the computer to put it in.

“Aa-aa-aa!” protested Dario, grasping the assistant’s hand and trying to grab the CD.

“Da-da-da-da” he screamed.

Tanja offered a paper and color pencils to Adi, and they sat to draw together.

Alma put Dario’s CD in computer – a melody of a beautiful children’s song about a

diligent and hardworking bee filled the space. “Ta-ta!” yelled Dario when he recognized

the music, and then he sat in Dalila’s lap, hugging her and singing: “E-e-eeee-ee-eeee,

a-aaa-aaaa-a, ha-ha-ha-ha, e-eeee”.

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Sometimes, interaction between pre-school children with autism and neurotypical children

was directly body-to-body or mediated by material objects, such as toys. Younger

neurotypical children in my study seemed to more willing to accept the peculiarities of

bodily expression of their autistic peers compared to older school children and their

parents. As seen from the following fieldwork excerpts, the younger neurotypical children

interacted more spontaneously, more instinctively and more physically than children in

Muhamed’s class, for example, where language was the predominant mode of

communication. Often in combination with touch, it was the body in motion that was

important mediator of intersubjective encounters.

Mak and Emil were in high spirits this morning, so they eagerly rushed into a

kindergarten playroom running in circles. Other children found it very interesting, so

they followed the brothers. Soon, the whole group was running, little bodies touching

! '#!

each other, laughing and giggling. Emil enjoyed this “game” a lot, smiling and running

faster and faster, while Mak left the group and went to see his garage, arranging cars in

lines. Irma and I sat on the colorful floor and Emil crawled into Irma’s lap, so she

cuddled him. Haris and Emina, two four year olds, jumped in Irma’s lap, kissing and

hugging both Emil and Irma. Emil enjoyed this a lot, with a contented expression on his

face. I played “airplanes” with Emil: I held him in my arms so that he “flew”, moving

him back and forth, back and forth. He seemed to enjoy this, giggling and running away

to make me do it again. I tried the same interactive “tactics” with Mak, but he rejected

my touch, escaping my arms, continuing playing with his cars. Then, he went to arrange

the chairs, so that he made a “tunnel”, crawling on the floor below. Other children

joined him crawling and rolling, their little bodies stretching between smooth wooden

chairs’ legs, leaning on each other and on the rough texture of carpet decorated with the

cartoons. Emina was especially tender with Emil, always hanging somewhere around

him, using every single moment to touch him or to say something to him. Although he

didn’t respond to her verbally, he touched her back and pinched her arm slightly

smelling it several times. He did the same when Haris hugged and kissed him.

Older children, such as those in Muhamed’s classroom were more likely to bond by

language and shared interests than by bodily interaction. However, affection and rivalry

were exchanged primarily by bodily actions.

It took me a while to find my way to a classroom in a labyrinth of corridors. I knocked

on the door. Children were sitting around the teacher, together looking like a one huge

colorful centipede with many heads and many hands, and were evaluating their math

tests together. As I came in, they turned curiously towards me. Muhamed started

jumping happily. “She is my friend. She has come to visit me!” he screamed proud of

his “privilege”.

Teacher asked for silence, introduced me as a “special guest” and wrote “Excursion to

the mountains” on a blackboard. They were discussing details of tomorrow’s trip: where

to meet, what to bring, how to prepare. Children sat on their places, pinching each other,

scribbling the words to their notebooks, reaching for erasers. I took a chair and sat

behind Muhamed’s place.

The classroom was small, but nicely decorated with children’s art projects, geographical

maps and posters with traffic signs.

Muhamed played with his EURO 2012 sticker album below his desk and turned to me

nodding as a sign of conspiracy. I was his ally. His desk-mate Hana, was leaning on the

desk, occasionally touching Muhamed’s elbow with her arm.

“Are you writing down what we have agreed about the excursion, Muhamed?” asked

the teacher gently taking away his album. “I will give you back the album at the end of

our class.” Disappointed, he took his notebook and started copying from the blackboard,

his pencil scratching on his notebook paper.

! '$!

Then, he turned to me again, crumpling two paper sugar bags with Tito’s signature (that

he had taken from a cafe table yesterday and about which he wrote me a song), nodding

and smiling conspiratorially, then hiding them back in the pocket of his schoolbag.

I smiled, but pointed to his teacher.

He continued scratching in his notebook, while whistling, his body shifting impatiently

on his chair.

“May I go and get us our meal?” asked Muhamed suddenly.

“Thank you Muhamed for your offer, it is very kind of you. But we have a class now.

You will do it during the break, right?”

Muhamed took his UV bracelet and started spinning it in his hands, swaying back and

forth.

During the break, children were crowding around the teacher discussing the math task.

Muhamed got his sticker album back, so he ate his pancake while browsing the album.

“Let me show you my album!” he said, touching gently the smooth stickers, explaining

me extensively the rules of football game, current results at the European

Championship, different national teams and their flags. Two girls, Nađa and Melika

joined us, posing questions to Muhamed and smiling to him charmingly. Nađa touched

his arm for a moment, and Muhamed blushed.

“Nađa, do you maybe have a sticker number 143?” he asked.

“What a question!” she replied resentfully. ”I do not collect the stickers. I am a girl”.

Another boy asked if there was Bosnian flag in the album.

“No, the Bosnian flag is not in the album. That is because Bosnia and Herzegovina

didn’t qualify for a championship due to the incompetency of Spahić who made a

penalty in the game against France”

Muhamed entrusted me his album: ”You can keep it, while I am doing other stuff. You

can even browse in it if you like. There are places for 539 stickers. I miss a total of 460

stickers”. I felt so happy because of his trust, interpreting it as a sign of closeness.

7&1582',1G$.#;).F*$

“You can't measure the mutual affection of two human beings by the number of words

they exchange”, wrote Milan Kundera (1985). My findings suggest that intersubjectivity in

children with autism (especially those children who rarely used language) is mediated

predominantly through the senses. Emil’s delicate touch, Ogi’s explorative caressing, and

Dario’s extroverted hugs all have a rich bonding, affection or joy. Furthermore, postures

and movements do converse deep thoughts and feelings.

It seems that young children, still unspoiled by language, engage in fruitful bodily

interaction. Personal relationships can also be strengthened by sharing passions, interests

and material objects, such as toys. Sometimes, being with people means simply inhabiting

the same space, being two living, feeling bodies in the same room.

! '%!

In this light, Bagatell (2010) gives inspiring insights into the social interaction of autistic

people referring to “autistic socializing”, a term coined by autistic self advocates.

Participating in the meetings and gatherings of a self-advocacy group, Bagatell (2010)

observed specific kinds of verbal interaction, often without eye contact and back-and-forth

conversation, but rich in humor. A peculiarity of this interaction was so-called “interactive

stimming”(Sinclair 2005:4 cited in Bagatell 2010:39) or the synchronization of self-

stimulating stereotypic movements such as hand-flapping, body spinning or rocking

(Bagatell 2010:39). As one of Bagatell’s (2010) informants said: “We do not have to talk.

We can just share energy to be social” (Bagatell 2010:40).

From my fieldwork excerpts, it is clear that there is significantly more in human

relationships than just exchanging verbal language. Although affection and thoughts were

not always expressed symbolically, it was actually possible to decipher the meaning of the

communication of the children with autism in this research, by feeling it in the body, by

experiencing bodily dispositions, postures or movements.

Merleau-Ponty presumed that intersubjectivity is “lived as intercorporeity and through the

five senses as introceptivity” (Merleau-Ponty 1968:114-115 in Jackson 1998).

In the absence of language, it is the mindful body that communicates, understands and

negotiates meaning. The subjective body is always there, but the presence of language

makes the body invisible, taken for granted, and discarded in the background. Autism is a

condition that makes neurotypical symbolic language incomprehensible, but at the same

time, it enriches the possibilities of social interaction, unveiling the forgotten potential of

the body to communicate.

Recent scholarly work in philosophy and social theory largely criticizes the important role

assigned to language within the dominant linguistic paradigm, arguing for the necessity of

the “corporeal turn”: acknowledging the lived “feeling” body and its legitimate role in

epistemology (Blackman 2008). According to Sheets-Johnstone (2009) “corporeal

affections and movements have no immediate meaning: we have to transform and translate

them into another language of scientific and social objectivity” (in Vermes 2011:259).

Cartesian dualism of mind and body and later a focus on language and semiotics in

humanities and social sciences, drove attention away from the corporeal dimension.

However, the revival of phenomenology brought back the body to the center of scientific

enquiry, emphasizing lived bodies. Sheets-Johnstone argues: “Language is not experience

and does not create experience” (2009:49), but the lived, moving, feeling body does.

! '&!

Thrift claims that language is certainly not the only mode of communication, and that

“much of what passes as communication inheres within a realm that is difficult to see,

understand and articulate” (Blackman 2008:138).

Political theorist Tamborinino presumes the existence of “corporeality of thought”, the so-

called “gut feeling” as an important condition for human interaction. According to

Tamborinino, acknowledging the intentionality of the body, its ability to feel certain

situations that cannot be articulated in verbal language implies recognition of the body as a

legitimate epistemological source. He emphasizes the importance of an “attunement” of

the lived body as the main premise for connecting people the body’s human and non-

human environment. Moreover, challenging Cartesian dualism, Tamborinino advocates for

a revival of corporeality within social theory (Blackman 2008:52-53).

! ''!

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Day-to-day social interaction with autistic children significantly depends on the

willingness of the environment to accept peculiar ways of a child’s communication and

broaden definition of social interaction to include different bodily modalities such as touch,

smell, movement, arts or music. Since intersubjectivity is a two-way process, the

relationship between children with autism and their environment is contingent on how their

actions are perceived and given meaning within the family, school and community. The

sense-making process of the idiosyncratic ways of interaction is significantly influenced by

their beliefs, values and attitudes towards autism in general.

Referring to the social model of disability, Biklen (2005) argues that in order to understand

an autistic person and his/her unique experience, one must first explore his/her social

context: development of alternative ways of communication depends primarily not on

neurological definition or psychiatric category, but on the environment - contribution of

parents (predominantly mothers) and access to adequate educational facilities. According

to Biklen (2005) Kanner and Asperger acknowledged the importance to adjust

environment to the autistic person’s peculiar interests and idiosyncratic ways of

communication long ago. Bodily interaction and affection sharing are crucial for

understanding, as Biklen (2005) underlines: “The intimacy that parents and family friends

have with children seems to play a role in their ability to see how they interact with

contexts and in turn encourages them to support contexts in which the children thrive”

(Biklen 2005:68). Acknowledging specificities of the autistic body, legitimizing the voice

of autistic people, avoiding decontextualization and misinterpretations of behavior and

actions well as presupposing competence are prerequisite principles for successful

communication with autistic people (Biklen 2005).

My findings suggest that parents in my study do not regard autism as a disease, but as a

difference, neurobiological in origin. Although they are the first to notice differences in

behavior, language and communication, the official diagnosis of autism usually

significantly alters family dynamics and everyday life functioning. All parents

acknowledge bodily interaction as socially meaningful and relevant. However, they insist

on intensive behavioral therapies and verbal language skills improvement in order to help

children fit into the non-autistic society that surrounds them. According to parents, their

great concern is children’s future social network – not because of disinterest for peer

! '(!

relations, but due to the lack of community understanding for their unusual behavior and

peculiar ways of communication. Closely related to the latter, are parental worries and

sorrow over the “lost childhoods”, influenced by local cultural values of “social childhood”

and importance of social capital (Bourdieu 1977). Furthermore, it seems that community

support is the highest in the traditional neighborhoods (mahala), while families living in

the modern settlements (especially those that come from other city or state) usually feel

alienated, lacking social network that could sustain them.

7&1*-.25-,&1$&/$)2-,*;$

Analyzing formal in-depth interviews and informal conversations with parents during my

fieldwork, I found that most of the parents believed that autism was neurobiological in

origin. Several parents pointed out environmental factors and food allergies. However,

they emphasized that autism was not a disease, but a condition that requires not a cure, but

a form of “rehabilitation” that will help children fit in better with the neurotypical

environment they would largely depend on in the future. “Autism is not a disease”, said

one of the mothers. ”It is more a state of the body. My child is not sick. He is a happy,

beautiful and cuddlesome child”. Some of the parents were seriously concerned with the

children’s future in a country such as Bosnia. One of the mothers said: ”Although I am

engaged in autism advocacy, deep in my soul I hope that my child doesn’t have autism,

but a transitory language problem. Autism is life-long, once you are born with it, you have

it for the rest of your life. And what would their life look like in Sarajevo?”

Parents also mentioned differences in perception and information processing, but

emphasized the importance to first see a child requiring love, care and attention regardless

of his difference.

I know that my son behaves differently, that he understands differently… he is

different… but on the other hand, my behavior towards him, and my husband’s or

family’s and friends’ towards our son is the same to him as is to the other children…

that means that we treat him as equal to our other children. His difference from the

others is the same as the difference of the other children between themselves…

everyone is different! Only, the level of his difference is a bit bigger… but still, his

needs are the same! And that is the point: we all have to understand that he might be

different, he might not speak properly, he might behave differently or not in the way

people expect him to behave, but his needs are the same as for the other children – he

needs love, he needs reassurance, he needs approval… he needs everything that all other

! ')!

children need! And therefore, you have to treat him in the same way – and that is the

main thing that someone has to understand: to accept him the way he is and to treat him

as same as the other children. And he also understands it well: he knows when someone

has been unfair to him; he simply knows that! And he will show you that he knows in

the same way as other children do! So, although his mind probably works in a different

way – differently perceives information, emotions… and what is really important in

human relations, and it doesn’t have to be related to autism is that we have to see him as

a person, we must not see him through his autism, because he is not his autism – it is

only one of his ‘levels’, that makes him probably different, and that is visible in his

behavior… but it doesn’t change his whole being, especially in terms of his needs…

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Although they were well aware of child’s peculiar social behavior and idiosyncratic

communication skills from early childhood, the official clinical diagnosis of autistic

spectrum disorder for most of the parents meant the beginning of a bitter struggle: not only

in terms of finding appropriate treatments, but also in terms of severe disturbance of family

dynamics. Coping with the specific needs (particular food, obsessive routines, lack of

sleep) and dangerous behavior (rushing into a busy street or self-injurious behavior) on

everyday basis and lack of understanding by a wider circle of family, friends and

community, inevitably led to the extreme frustration and exhaustion contributing to a high

rate of divorce. During my fieldwork, I noticed that it was almost by default the mothers,

who took an initiative in re-arranging life styles after receiving a diagnosis according to the

child’s needs, organizing everyday activities for children, insisting on the acceptance of a

child and engaging politically in parental organizations. Most of them were severely

depressed, tired and exhausted, but still extremely caring, affectionate and full of

understanding for their children. According to mother’s narratives, fathers usually had

more difficulties to cope with a child’s difference. Most of the fathers in my study were

silent or even completely absent. With the exception of one father, it was mothers and

children that I spent most of my time with, not being able to grasp entirely their

relationship with children. However, my age and gender also might play a role, since as a

young married Bosnian woman, I was not expected to spend much time with the fathers in

the families. Furthermore, the fact that autism is more common in boys than girls and the

cultural importance of having a son may also play a role, but due to time limitations, I was

not able to explore this phenomenon deeper.

! '*!

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When asked to describe their child, most of the mothers employed bodily idioms: either

tactile or affection adjectives, such as “cuddlesome”, “huggable”, “lovable” among many

others, implying the importance of the body and senses in the way they perceive their

children. They also emphasized the peculiarities of their interaction and bonding, as well as

distinctive concepts of affection sharing, usually bodily in its nature.

Speaking about her son, Orhan’s mother emphasized his idiosyncratic sensory ways of

communication: by touch, by the gesture of thumb sucking and by his arts – the actions

that are imbued with social meaning if given in adequate context:

He is a very lovable child. I always say that first, because that is what he is: he is very…

LOVABLE! He loves his family so much, he likes to show his emotions as well and

that is always, I think, surprising for people who know that he is autistic. Even with the

people he had never met before – he has his way of sharing, so he shows affection – if

he likes someone, he will sit next to you closely and touch you with toes and will put

his thumb in his mouth (that is something that he does all the time)…one of his

“stereotypes” is sucking his thumb… and he does it when he is happy as well… so he

will just sit next to you and suck his thumb –and that is the way he shows that he likes

you or he is interested in you. And… apart from being lovable child, who likes hugging

and kissing, he is also very talented – the second thing when I think of my son is that he

loves to draw as you probably saw. His drawings are very expressive.

Ogi’s mother emphasized that her son liked being cuddled, searching for touch, affection

and physical security.

He is so cuddlesome. He likes being cuddled in any possible way! Usually, he

approaches you, and puts his head in your lap, or puts his face close to yours,

sometimes so close that they touch each other… or he just touches your face with his

little fingers… especially in the morning when he wakes up, he likes to touch my face.

But he sometimes approaches an unknown person, if he likes him/her and touches

him/her, touches his/her face…. Or hugs him/her. He likes to hug the teachers in his

kindergarten – he sits in their lap and lets him being cuddled. Very often when I come

to pick him up, I find him cuddling with his teachers.

He treats them as they are his mothers.

! (+!

Figure 6. Communicating love

Ana found popular representations of autistic children as distant and alienated erroneous –

she claimed that Dario was always very aware of what was happening around him, always

bodily “present” and interacting:

He is very aware of everything… he is very aware of everything and he asks for

touch…he is not sensitive to the touch…and he touches people, too… I mean, if he

likes someone, even an unknown person, he can hug him firmly and so… He doesn’t

have resistance to physical contact as probably some people with autism do…to touch,

you know. And he is relatively “present”.

However, when it came to language skills, Ana employed a computer metaphor in

describing her son. This metaphor is commonly reproduced in popular discourse to denote

autistic “disconnectedness” with their environment. Ana emphasized unnaturalness of

speech communication and his preference to use body in communication.

! ("!

(I)t seems his head is like a computer with lots of folders…and everything is strictly

divided in these folders…and in one of those folders is speech, but it is somewhere far

away…it has been locked, it is somewhere far away in his head, far far away…it is very

difficult to take out this folder… when it is never taken out…there is no routine use of

it…there is no use of the language, it is dead language, it has not been used at all…and

what is worst of all, I think that he doesn’t realize why he should use it, you know, why

to use it? He would rather express himself non-verbally; he will rather ask a known or

unknown person in a non-verbal way than to…you know…I have a feeling that this

child of ours actually hates the speech! He hates it! It seems, as he has been so lazy to

use it - as it is something very unnatural for him. Actually something that is very natural

for us, speech is the natural way in which we communicate, he doesn’t feel it as such, it

is not natural for him and that’s it.

+)F,1G$,1-#.#*-*$,1-&$)$G);#$&/$,1-#.)5-,&1$

Children with autism are usually described in biomedical and psychological literature not

only as deficient in purposeful interaction but also as lacking imaginative play and having

rigid interests. Some of the parents in my study indeed suffered because of child’s inability

to entertain itself in common ways, and because they were not able to interact with him or

her. One of the parents in my study expressed it as a huge problem for their family, making

them feel helpless and desperate:

(T)hat is really a problem…that he doesn’t know how to entertain himself in a

meaningful way… and that is a huge problem for us… you know…that he simply does

not know what to do with himself, that it is so difficult to make him to do

something…and what is worse, when he loses stimulus from the outside, he than really

doesn’t know what to do with himself

On the other hand, several mothers used child’s interests to creatively and imaginatively

interact with children through their sensory preferences and peculiar interests, inventing

games that are full of both language and bodily-mediated interaction. They broadened their

concept of interaction to include language exchange, but also touch, posture, movement,

taste or music. Maja’s therapeutic program is based on joining Faris in his activities and

plays, creatively building interaction on the basis of his interests. Maja included Faris in all

of her daily activities: gardening, cleaning, cooking, and laundry washing.

! (#!

Figure 7. Faris’ interactive room

Although Irma doesn’t like Balkan music, she joined her sons in dance, transforming it

into a fruitful interaction. She changed feeding into a fruitful game of sensory interaction,

too. The following excerpt of my fieldnotes describes one typical afternoon at Irma’s

home:

Aida took a handful of delicious M&M’s candies that they like a lot - “This is your

reward if you answer me a question with WORDS”, she said. “Where is Selma?” she

asked, emphasizing every word. They both raised hands towards me giggling. Mak

repeated “Slma” and run away. Each of them got M&M’s candy for correct answer.

Then they played with questions: “What is your name?”, “What is the name of your

brother?”, “How old are you?”. Between questions and answers, Irma hugged, tickled

and cuddled them, taking them in her lap so that they looked like a colorful and soft

yarn hank, their heads, arms and legs twisted and intertwined. Mak started reciting a

song, performing, smiling charmingly and making grimaces. Emil was quieter, and his

words less comprehensible. While Emil was reciting, Mak hugged me and stayed

leaning against my shoulder.

“Every afternoon we play like this, sometimes for hours!” said Irma. ”This is our time

to be together and to interact!”

! ($!

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However, although parents acknowledged bodily interaction as very important in

mediating intersubjectivity, most of them highlighted the importance of verbal language.

Parents would do anything to help their children learn verbal language, from employing

speech therapists to working long hours with children by themselves. What is important to

mention is, that according to my findings, a crucial dimension of this attempt was not a

wish to “normalize” children, but a parental concern over children’s survival in the harsh

world inhabited by non-autistic people and created according to their needs. Not having

verbal skills meant for them not only being different, but more importantly being unable to

live independently, to have a family, to educate or to work.

“I will do anything to help them start expressing themselves through speech. I helped Mak,

now I have to help Emil, he is the one who needs more support”, said Irma determinedly.

“It is not just about my wishes. It is about them living lives in this country and in this

world” Every time when Mak and Emil’s teacher in the kindergarten reported their success

in terms of the new words or words spoken more clearly, Irma burst into tears, being

emotionally overwhelmed.

In the similar manner, Orhan’s mother expressed her contentment with his verbal

communication, which was gradually replacing bodily interaction, after he had been

included in an educational program tailored to his specific needs.

(H)e has started using words to express his needs: one word, or more… when he wants

to go to McDonalds or sees a sign, he says “McDona” – that is what he really likes!

Although we know that it is not good to him, hearing him say “McDona” is so sweet

that in order to encourage his speech, we bring him there. (…) If he is not happy,

sometimes he hits… and he hits other children, if he doesn’t want their presence or if he

wants to do something else… and we are really trying to discourage this kind of

behavior, because we want him to learn other ways of communication. Generally, if he

is happy, he will hug his brother, his sister, daddy or myself. And he has just started

expressing it with words… for example if he sits in the car and goes on a trip with his

family, he puts his thumb in his mouth and says “Happy”. And hearing this word

coming out of his mouth is one of the best things in the world for me! That really makes

me “Happy”, too! Also, we play a game: if he sits in a car and says “Peter Pan”, we all

say “Peter Pan” and then he starts telling us all the names of characters in Peter Pan, but

in his way… so we have to ‘recognize’ what he says and to repeat after him properly –

and he likes it so much! This is how he found a way to communicate with us! Before,

we couldn’t really understand what he was saying – now we can hear it, it is a word

what he says, and then we translate it to our language and repeat it and it makes him so

! (%!

happy when he realizes that we understood him, that we understood his language! So,

we are slowly starting to find out our ways of communication – and this is much more

functional than it used to be. Because, before, he would have rolled on the floor, kicked,

screamed, if something was not done in the way he wanted. Now the communication is

much better: he sits down if I tell him to sit down, at the doctor’s or dentist’s office…

before it was not possible at all… so in certain sense, our life is much easier now.

Nevertheless, some of the parents expressed their concern regarding insufficient verbal

interaction. Although they were aware of child’s bodily expressions of emotions or

intentions, a lack of verbal language meant they were not able to respond to a child’s needs

promptly, leading to severe temper tantrums: “(S)ometimes, in some situations, we do not

understand him, we do not know what does he want to say, what does he want to tell us.

We do not understand him and that is extremely frustrating both for him and for us”.

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During my fieldwork, most of the parents shared opinion that children hardly made friends

outside the family circle or close family friends: not because children were asocial, but

because the community didn’t accept their behavior or didn’t understand their way of

interaction. Therefore, it was not the child’s difference in social relating, but the way it

was negotiated and accepted within the community that was troublesome.

Orhan’s mother emphasized that differences in understanding the world made her son less

“connected” with society and therefore he was missing some of its important aspects – not

on the account of his disability, but because it was society that lacked awareness,

appreciation and support.

There is an element of a tragedy in it (autism), because it is like… a person being

denied of certain aspects of life that are very important for all of us. I think that only

when you live with it, you realize how important many things we – people who do not

have autism – take for granted and do not respect… like relations with other people,

connections with a society… we do not really see it… It is (social interaction) actually

what a life IS! And when you do not have it – it is like a major part of your life has been

denied. That is for me the most difficult thing to accept when I think of my son…

because people would never understand him really. And most of his (social)

connections will be reduced to his family, to people who are closest to him. On the

other hand, I think that the connections he has with his family are probably much

! (&!

stronger then those that most nonautistic people have. So, he is not completely deprived

(of social relations) and in some ways he has been given ‘better’ things…

On the other hand, Ana expressed her skepticism regarding a “meaningful” interaction of

autistic children both with neurotypical and autistic peers. However, she acknowledged

that there was a problem in understanding and approaching children with autism from the

side of the neurotypical environment.

They give up, when they see that there is no feedback from his side, that he is

not…that there is no interest…than they give up, and he… he makes himself happy

with some other activities…I do not know… he starts playing with some kind of toy

or something else. Regarding his schoolmates, I do not know to what extent there is

social interaction between them at all, because all kids in his class have autism. When

I see them outside the school, I do not see any concrete interaction between them, you

know I do not see it… and these children spend four to five hours together every

single day at school… so, I do not notice if they have their ways to interact… so to

say… to react…somehow…I do not know…but me, I do not see it… this side is really

poorly developed… this social interaction… and we do not know how to make him

interact with other people…it is as he doesn’t have it… in that extent… the urge to

interact with other people, so other people get confused when they want to interact

with him, because they do not know how to approach him… in which way…and he

doesn’t show any special interest for other people, too…

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Sociality is extremely important in Bosnian society – an extensive and firm social network

is valued more than any other form of wealth. The local idiom raja is used to denote not

only a group of people connected by bonds of friendship, but it also means acquiring and

respecting certain moral values, solidarity. As one of the mothers said:

You make real sincere friendships only in your childhood, by playing carefree with

children in the neighborhood, sharing your food, toys, balls, and pocket money. These

bonds last forever. It is in your pre-school and early school years when you learn what it

means to be raja and to have raja. And once you have raja, you are never alone in your

life – you always have someone to count on.

Therefore, although parents in my study acknowledged the peculiar ways of child’s

interaction, many of them expressed the sorrow over “lost childhoods”: the inability of

! ('!

children to establish bonds of raja. For parents, it was not play and entertainment that

worried them, but their concern for the future life.

Talking about Ogi’s social relations, Lejla started crying:

What saddens me most is the fact that he still doesn’t have his best friend… it is the

most difficult thing for me… he is now four and half years old and he should be talking

about what happened to him in his kindergarten, whom he met, what he did and played,

who were his friends… he would learn academic skills-how to draw, write… but he

misses childhood that his peers have.

Then I asked her what about Dejan, a little boy from the neighborhood.

Oh, yes, he has his friend Dejan (Lejla was smiling). Ogi likes him very much.

Although he needs some time to get used to him, if they haven’t seen each other for a

while… so he hides from him at the beginning, especially if Dejan is loud, loudness

annoys Ogi. But soon, he gets used to him, and then he starts hugging and kissing

him… sometimes, they lay or roll together on the floor. Dejan imitates him and that’s

what Ogi really likes. He usually needs some time to get used to children…but in fifteen

minutes he approaches them, touches or hugs them.

Talking about her sorrow over the “lost childhood”, Maja recalled an episode:

Nino, a boy from neighborhood and the youngest volunteer in Faris’ program plays

football in a local club. It was a state competition and I brought Faris, hoping that he

would join the kids playing. We sat at the bench on the stadium stands, between the

parents and supporters of Nino’s team. In the middle of the game, Faris rushed onto the

terrain, took a ball, and ran away. The whole team and myself were running after him,

and it was funny for him. Then, a coach finally caught him, took over the ball and

slapped him in the face! I was in a state of complete shock, not knowing how to react.

Everyone interpreted it as misbehavior and other parents looked at us reproachfully.

Children continued the game, and as we had to wait for Nino, we didn’t come back to

the stands, but stood by the river, where Faris played with little stones. Moreover, on

the way back, Nino was hungry and wanted to buy doughnuts in McDonalds. In the car

mirror, I watched the two of them sitting on the backseat: Nino eating his doughnuts

after the football match and Faris, on a special diet, eating only liquids, absorbed in his

games. I was flooded by a wave of sudden sadness. His childhood, the best days of his

life, have been passing in a struggle to learn how to communicate with people in a

comprehensible way, spending long hours interacting with volunteers in his room.

! ((!

But at the same time, Maja acknowledged the “true” friendship between Faris and Nino.

Every time when I came to visit them Faris mentioned Dino although he was not present.

“Nino draw a house”, “Nino goes to football match”, he repeated. Once, Faris kicked Nino,

so that he started crying in pain. Through tears, Nino said “It doesn’t matter that you

kicked me. You are my friend and you will be my friend forever”. Maja emphasizes that

Faris’s vocabulary was very social; he was always pronouncing the names of people he

liked –except his aunty, cousins and grandma, the protagonists of Faris’ echolalic stories

were mostly his neighbors (komšije), who used to work with Faris as volunteers.

Maja and Faris live in a traditional neighborhood in the old part of the town, built during

the Ottoman rule on the model of mahala.

Figure 8. Traditional settlement - Mahala

Streets are narrow and steep, surrounded by closely built houses. Although lots of friends

and family members abandoned Maja and Faris in the course of time and their social life

was reduced to Maja’s sister, several friends and mothers of autistic children, it was the

neighborhood (komšiluk) that gave a hand to Maja. Since Maja was an artist, she had lots

of raja among musicians. After Faris was diagnosed with autism, they organized a charity

! ()!

concert, and donated the revenues to establish the home-based program that the family

engaged in. Most of the neighbors and their children worked at a certain point in time as

volunteers with Faris, spending on average two hours three times a week interacting with

him in his room. On the other hand, psychosocial support of families who live in the newly

built residential areas, or who came from other cities and didn’t have komšiluk and raja,

was by far inferior.

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Most of the parents also underlined that it was also a community that needed to change its

attitude, in order to acknowledge children’s values, humanity and personhood, not only to

judge them by their difference in behavior and communication skills. As one of the

mothers expressed it it:

(T)his condition should be seen from different perspectives, to be seen as…not as

something that defines that person, but only as a small part of him/her. It is a part of that

person, but…umm… he/she is first a human, a person, then he/she has autism, or

asthma, or whatever… So, first he/she is the person. That is the most important. First is

the person, and then come other things

Another parent shared the similar opinion:

(…) of course I won’t say that I like autism, and that I am happy that my child is

autistic, because I am completely aware and constantly worrying about his future life

and being accepted by society, but on the other hand while I am worried about that, I

am also trying to strike a balance by actually looking at him in the way he should be

looked at: as someone who is enriching the big rich tapestry of life. But I am doing as

much as I can to make society sees these sides: he is not all screaming or having

tantrums or misbehaving, but also very talented and humorous.

Although most of the parents accepted peculiarities of their child’s body and

acknowledged bodily interaction as legitimate and meaningful, their worries about the

child’s future and independence pushed them to search further for treatment options, aimed

to change the child’s behavior and improve language skills. Parents agreed with the social

model of disability, respecting the child’s value and personhood and presuming that autism

is a cognitive difference, but at the same time being aware that the way you live your life

! (*!

in the harsh neurotypical society cannot be changed over night. According to Barnes and

McCabe (2011), the main parental arguments in favor of treatment and cure include the

possibility for less dependence on caretakers and significant improvement of life quality.

Landsman (2003) and Silverman (2012) explore ethical dilemmas that parents of disabled

children face (especially regarding accusations by self-advocates of trying to “normalize”

their children), pointing out their moral rights to advocate for children on the basis of

unconditional love, nurturing practices and care. According to Landsman (2003), most of

the mothers hope for the best possible future for their children. She suggests that after

facing the diagnosis of disability, American mothers, being mediators between disabled

children and the society, must navigate these shifting terrains: through experience in

nurturing and caring practices they not only reconstruct their own meaning of motherhood,

but also evolve from the passive followers of biomedical advice, to more active promoters

of the child’s strengths. They are the first to accept child’s value and personhood,

becoming powerful advocates to pursue the environment to do the same. Both medical and

the social model fail to acknowledge parents as trustworthy social actors, explaining their

actions either in terms of coping strategies or actions of normalization. In the book

“Understanding Autism” (2012), Chloe Silverman explains how parents occupy vague

position between biomedical professionals and autistic self-advocates. While biomedical

professionals accuse parents for being “irrational” and question their ability to decide for

their children, autistic self-advocates blame parents for being egocentric and pursuing

research on the cause and treatment in order to fulfill their personal desire of having a

“neurotypical” child. Significant medicalization of autism over the past two decades led to

the adoption of biomedical discourse by parents with the shift of advocacy activities

towards research fund-raising (rather than the exploration of the social context that defined

autism as a disorder). However, by living with their children and caring for them, parents

are actually those who first recognize their value and personhood. Silverman (2012)

describes parents as being “knowledgeable observers” and “rational actors” (Silverman

2012:129) who are aware that their decisions may affect the future of their children. She

emphasizes that parental love “relates to practical knowledge, the ethics of care, and

concepts of moral personhood, familial commitments and dependence (…) It also matters

to treatment choices and to the ethics of interventions” (Silverman 2012:127-128).

To summarize, in order to study social interactions of children with autism, it is important

to pay close attention to the wider context: not only of the family, but also a neighborhood,

school and community in general. Parents in my study considered autism to be a form of

! )+!

cognitive difference; they acknowledged and appreciated peculiarities of sensory

experiences and legitimized bodily interaction. Nevertheless, parents insisted on intensive

behavioral and speech therapies – not to “normalize” children, but to help them fit in a

harsh neurotypical society, because they cared for their insecure future. Diagnosis of

autism, however, significantly altered family dynamics and forced parents to change their

life style. Since social networks are highly praised in Bosnian society, autism affects

people both negatively in terms of the sorrow over inability to establish firm social bonds,

and positively – creating informal psychosocial support for the families. Most of the

parents suggested changing the society in order to acknowledge personhood of people with

autism, including idiosyncratic way of their social interaction. Family, especially mothers

who love and care for children unselfishly and unconditionally despite the circumstances,

remain the strongest cornerstone for children with autism, being the first to recognize their

value and needs.

! )"!

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Being a condition that affects social interaction, lately autism has come into the focus of

social sciences’ enquiry, especially of scholars interested in intersubjectivity. Recent

studies in linguistic anthropology provide a valuable insight into language mediated

intersubjectivity and the way children with autism navigate their everyday social worlds.

Autistic narratives, especially autobiographies written by autistic self-advocates,

emphasize peculiar sensory experiences as well as the idiosyncratic ways in which autistic

people socially interact. However, bodily-communicated intersubjectivity hasn’t been

studied much. Moreover, literature on social interaction in children with autism in non-

western cultures is largely lacking.

My explorative qualitative study, conducted with six children diagnosed with autism and

their families over the six-weeks period in Sarajevo, suggests that intersubjectivity in

children with autism is predominantly mediated by the senses: touch, but also kinesthesia,

smell, hearing and vision. I conducted my fieldwork bearing in mind Merleau-Ponty’s

(2002a, 2002b) notion that the body is the subject of perception: it is through senses that

our environment is experienced, given meaning and enacted upon. Although for me, as a

neurotypical person, it was not possible to decipher the system of meanings of autistic

children’s perception, I could only interpret what I, as an embodied researcher, felt to be a

relationship between children and their parents, siblings, researcher, caregivers or material

environment.

As a theoretical framework, I used the anthropological concept of embodiment and

intersubjectivity. The phenomenological definition of intersubjectivity goes beyond

empathy, mutual understanding and shared experience and includes the bodily dimension,

language and material environment/space. Furthermore, I referred to Hacking’s (2009a,

2009b, 2009c) approach of social interaction between autistic people and neurotypicals.

Autistic narratives (autobiographies) helped me to understand peculiarities of autistic body,

experience and interaction with the environment.

In order to study personal relationships and everyday lifeworlds of children with autism, it

is necessary to examine specific spacial contexts: Sarajevo has a distinctive historical,

economical and political background that largely influences everyday life of people.

Sarajevo is the city with the recent history of war: ethnic tensions, significant demographic

changes, ruined infrastructure, transition to capitalism affect the way people construct the

categories of difference and autism. Furthermore, adverse conditions, such as economic

! )#!

uncertainty, resource-poor health system and insufficient educational system are everyday

challenges that children with autism and their parents have to cope with.

Although language (and other semiotic faculties) is an important part of intersubjectivity,

“the absence of language does not mean that communication is not happening”(Duranti

2010:2). This notion applies to children with autism in my study, too. Although affection

and thoughts were not always expressed symbolically, it was actually possible to decipher

the meaning of the communication of the children in my study, by feeling it in the body, by

experiencing bodily dispositions, postures or movements. Different forms of touch, but

also various postures and movements do converse deep thoughts and feelings. It seems that

young children, still not very skillful in language, engage in fruitful bodily interaction.

Personal relationships can also be strengthened by sharing passions, interests and material

objects, such as toys. Sometimes, being with people, however, means simply inhabiting the

same space, being two living, feeling bodies in the same room.

In the absence of language, it is the mindful body that communicates, understands and

negotiates meaning. The subjective body is always there, but the presence of language

makes the body invisible, taken for granted, and discarded in the background. Autism is a

condition that makes neurotypical symbolic language incomprehensible, but at the same

time, it enriches the possibilities of social interaction, unveiling the forgotten potential of

the body to communicate.

Although parents of autistic children in my study acknowledged and appreciated the

peculiarities of sensory experiences and legitimized bodily interaction, they kept insisting

on intensive behavioral and speech therapies. However, the aim of these therapies was not

to cure or “normalize”, but to help children live in a harsh neurotypical society. Most of

the parents in my study considered autism to be a form of cognitive difference, not a

disease. Diagnosis of autism, however, significantly altered family dynamics and forced

parents to change their life style. Since people’s social networks are highly praised in

Bosnian society, autism affects people both negatively in terms of the sorrow over the

inability to establish firm social bonds, and positively – in creating informal psychosocial

support for the families. Most of the parents suggested changing of the society to

acknowledge personhood of people with autism, including idiosyncratic way of their social

interaction.

I hope that my study contributes not only to the corpus of social science literature on

autism, but also to the scholarly work on the importance of the lived mindful body in social

and communicative processes.

! )$!

Furthermore, my research illustrates how specific cultural and historical circumstances

might influence interaction between children with autism and their parents. Despite the

unfavorable conditions, the family, especially mothers who love and care for children

unselfishly and unconditionally, remain the strongest cornerstone for children with autism,

first to recognize their value and needs.

Although my study was limited (in terms of short period of fieldwork and small number of

children), it opens up a space to further studies on bodily-mediated intersubjectivity in

children with autism.

! )%!

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diagnosed with autism

Figure 1. Ogi examining a wheel

Figure 2. Dario and researcher interacting

Figure 3. Mak and Emil sitting in their armchairs

Figure 4. Faris having a dinner

Figure 5. Muhamed’s favorite game – “Children and Traffic”

Figure 6.Communicating love

Figure 7. Faris’ interactive room

Figure 8. Traditional settlement - Mahala

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