(In this fourth post in our series of guest posts on the social study of autism, it’s great to have Soula Marinoudi. Soula received her Ph.D. in 2014 from the department of Social Anthropology, Panteion University, Athens, Greece. Her research is concerned with the biopolitical regulation of disability and vulnerable subjectivities and bodies as well as with the ways language and the body, meanings and senses, empathy and performativity intersect, with an emphasis on autism and the formation of autistic subjectivities. She currently works as a researcher for the EU Seventh Framework Programme “Rescue”: Patterns of resilience during socioeconomic crises among households in Europe.)
During the last few years, while I pursued my ethnographic research on the formation of autistic subjectivities, I came close to autistic people, a minoritarian group, with which I wasn’t biographically connected. Still, the roots of my search were deep in my psychic structures. As a girl, I had experienced feelings of exclusion and not belonging. My relationship with the autistic people I met during the last five years helped me realize some of the meanings that these feelings have for me and for others, but specifically raised two questions which I need to discuss. The first concerns the notion of empathy, what anthropologist Veena Das refers to as “the feeling of pain of others in one’s own body”. The second is related to the concept of performativity, that is the psychic and embodied reproduction of the dominant discourse.
Recent psychological accounts of autism such as the Theory of Mind, provide a cognitive approach to autism and empathy, suggesting that autistics do not understand the minds of other people. Unlike this dominant cultural image of human communication, in line with which autistics only have deficits in contacting others, I focus on the primacy of their intense sensual experiences and suggest that we, neurotypicals, have no empathy for autistic people.
The definition of autism which I prefer, has come out of readings of autistics people narratives and describes the neurological disconnection between language and the body, during which the body blocks brain waves[1]. No matter how different their lived sensory experiences are, what is coherent in autistic life is the perception of information which cannot be generalized in conceptual schemas. Even for autistics who have speech, language is idiosyncratic and subjective, mainly affected by their senses, memory and experience, rather than discourse and representation.[2] As Dawn Prince writes “For me, language was blended inextricably to context and memory. This melding represented the most important thing in the world, and everything, from bathrooms to snails, to dogs, had language. If a thing existed, it existed as a living part of language and had a deep understanding of its place in the vibrations of speech, in the vibrations of existence.” Temple Grandin argues that some autistics are thinking with pictures, others smell in order to orient themselves,like my friend Barbara, who used to smell my hands every time we went on a different place than the one we used to hang around and I felt that this gave her a sense of identity and familiarity and helped her calm down. Noises are sometimes painful, the senses of pain and temperature on the skin are extremely subjective, a touch can be felt as a slap, while a surgery can be totally painless. Some people need to see and touch their bodies in order to feel sure of their existence. Time is chaotic. John asked me once: “Have you lived in the 19th century?” “No, I said, I haven’t.” “Why not?” John continued, “What are the limits of time?”
I feel that autistics’ subject position derives from these incoherent sensory experiences, given that they are mainly affective, based on personal memories. Most of the autistics I met do not internalize and thus do not reproduce the structures of dominant discourse that affect our worldviews. I intend to focus on this difference and examine what comes out of this conflict, between the discursive bodies that we neurotypicals perform and the sensual dis-embodied autistic lives.
Since I had constructed certain cultural identities and, consequently, carried their political implications, I had to deconstruct these discourses and the power relationships, which I had internalized, in order to feel how autistics feel and how they are related to their environment. Autism often means stress and anxiety for the loss of the self and of the other, for the loss of time, even for the loss of one’s one body which is condemned to change and deterioration. This is of course common to neurotypical experience as well, but, in my experience, language and identities blocked the reconciliation with these inner feelings. The procedure of acquisition of language creates a conflict between our personal feelings, our senses, our memories and society’s expected representations. Language is mostly a tool for us to become accepted members of society and additionally, as Dawn Prince stresses “I learned very early that for most people, language was a kind of weapon rather than an amorphous mist of the birth waters of reality. It seemed that for most speaking humans, language could be considered a violent activity, in that it cut up the world, and its use also cut groups of people one from another. A knife was just a knife and bore no relationship to the cutting of language. A chair was just a chair where nothing sat. A breath was just a breath, a singular thing, apart from the heart, apart from the atmosphere, a thing separate from saying”.
I found that autistics sense this vulnerability which we all avoid to come in touch with and which is controlled by the fact that biopolitics locate us in certain power positions (gender, sexuality, health, race) where we transfer our feelings. In opposition to this reproduction of the social contract, empathy presupposes the death of our ego, of the world as we imagined it, of the imaginary spectacle of ourselves, which derives from our personal biographies. I argue that empathy and performing our social roles are mutually exclusive. In order to feel the pain of others on one’s own body, therefore in order to communicate with autistics is conflicting and incompatible with performing the dominant discourses which mediate our emotions, senses and relationships. Empathy presupposes the feeling and experience of abjection and exclusion from human society, it presupposes this loss of intimacy and the reconciliation with the pain of our inner existential loneliness, which we experience whenever we contact others. It presupposes the autistic feeling of not being able to avoid the affect, the body and its structural vulnerability.
Autistic language is the idiosyncratic relationship with the senses. It is experiential and we need to deconstruct our certainties in order to communicate with them. My autistic friends ask me how do we buckle a button, why do women wear earings, what is “you are”? what is time? And I think I understand now that I need to travel the distance to communicate. More specifically, from the privilege of common language and belonging to face to face relationships, personal contact, mutuality.
[1] William Stillman, Empowered autism parenting: celebrating and defending your child’s place in the world, Jossey-Bass, 2009.
[2] Dawn Prince, Cultural commentary: The silence between: an autoethnographic examination of the language prejudice and its impact on the assessment of autistic and animal intelligence, available at http://dsq-sds.org/article/view/1055/1242
Related Posts:
The Autism Anthropologist 
As a Spectrum person I find Soula gives a refreshingly close understanding of some aspects of an Autistic’s existential reality.
Thank you so much for this feedback, it means a lot.
To me the text makes learning-language sound harmful and language negative. Do you know of critical material/ texts that deal with language acquisition of children diagnosed with early childhood autism? thank you
I’m not sure that’s what I got from the post. I think language poses its own set of problems and challenges, for sure. But I don’t think Soula was trying to imply that it’s harmful. But I should probably let her comment on this herself!
As for texts dealing with language acquisition among autistic children, I would suggest checking out studies on autism by Elinor Ochs and Olga Solomon. I’d be interested to hear your thoughts!
I don’t mean to say that language is harmful, but that it is social, and thus it has certain connections with ideology and power which we do not realize. See for example the work of Pierre Bourdieu (Language and symbolic power) and Judith Butler (Excitable speech). I believe that autistics learn differently and for them language is always contextual as it maybe should be.
I fully agree with Ben about the contribution of Olga Solomon and Elinor Ochs on this. I specifically suggest “Language socialization across cultures”, Bambi Schieffelin and Elinor Ochs, Cambridge University Press, 1986. It is not about autism, but has specific claims about language acquisition in different cultures that broadens our knowledge about different, multiple, friendlier ways of language socialization.
Is language ALWAYS contextual for Autistics? Even if that is the case Soula there is another dimension …. that of “Perception of the context” which I have found in my life as an Autistic is not necessarily the same for each Spectrum person and in many, possibly most cases, quite different from how the context is perceived by a neurotypical person.
I have a very clear and true example of of this difference:
When I was 30 yrs I was invited to a “fancy dress party” . Please note it was not an invitation to a “fantasy dress party”.
I wore an elegant faux chamois long gown, dressed my long auburn tresses with an antique rhinestone and sapphire necklace so that the pendant rested in the centre of my forehead. Somebody in the share house asked me what I was going as ….. internally I thought it a silly question and decided to draw a large question mark on each upper arm.
At the party I saw people dressed as Mr, Spock, Napoleon, Maire Antoinette, Robin hood etc.
Thought this all very childlike.Someone came up to me and asked ” who are you”? I gave my name to which he responded with “What are you”? I answered ” A human being”. From his body language I gathered I had answered incorrectly.
He stated he was Napoleon. He didn’t say he was adopting the image/appearance of Napoleon but that he “was Napoleon”.
In the context of reality circa 1978 he definitely WAS NOT Napoleon and I DEFINITELY WAS a human being dressed in “fancy i.e.. special or unusual’ Collins Australian Compact Dictionary, my colloquial understanding of the word. Also I always hated playing dress-ups or imaginary games…. couldn’t see the point. A protest, an honest response to a philosophical dilemma.
Whereas for him in the context of “fantasy” He WAS Napoleon . What he thought I was was written in his body language……NOTHING. Needless to say he moved on and I became aware that in my lack of conformity once again I’d transgressed to the point of being ignored or what was worse .. ridiculed.
Perception of context is crucial. As for language always being contextual for Autistics that is a big generalisation. Possibly my understanding of the role of “association” of words with specific situations and/or characteristics may be considered , as you say Soula, contextual but for autistics in their heterogeneity is probably largely idiosyncratic.
N.B. I am not an anthropologist nor a linguist. I have studied various disciplines at University.
My only qualification that permits me to comment with some authority ( experiential) on these questions in that I am Autistic. Often academic disciplines acknowledge only the “opinions”
of non Autistics, and paternalistically eschew any serious dialogue with the subjected “subjects’ of their study…. a situation commonly experienced by marginalised peoples.
My purpose for contributing is to thank you Ben, Soula and others for bringing an anthropological approach to the study of Autism. I found this site by chance … putting “Autism and Anthropology” into Google…. I have found other disciplines lack the holistic and cultural perspective I seek. Thank you for your interest and patience in reading my non academic “replies”.
Τhank you for this critical point, it may be an generalisation, you are right, but what i intend to say about context and language is that language is indistiguishable from personal experiences. So thank you for sharing your experience with us.
I agree that the relationship between personal experience and language acquisition is intrinsic. If language is acquired in a manner that displays lack of respect and sensitivity to another ( eg. aggressive, defensive, accusative, abusive, contemptuous, dismissive etc) this will have a huge influence in framing that person’s personality and world view. Each culture’s intrinsic values and attitudes towards life in general and interpersonal relationships is expressed in the language itself ( words, syntax etc) AND the use of intonation.
Imperialists often forbade the use of the language native to the territories they colonised…. a form of cultural genocide.
Soula, it takes me as an Autistic time to process all the ramifications of spoken and/or written language. My replies have addressed snippets of your post and I apologise if I have thrown your complex and insightful awry.
I find your work interesting and am keen to spend more time considering various aspects.
Language… I was not a good foreign language student as a child but as an adult I acquired basic – intermediate levels ( informally during my travels and living in different countries) I also studied some of these languages in formal setting at University as Major Sequence. Reason for interest in language was TO COMMUNICATE with non English speaking peoples. During my travels I avoided mixing with native English speakers as I’ve always been interested in other cultures. I did notice that as an Outsider in other countries I felt “Real’ by that I mean my position was authentic… whereas at home I experienced life as an Outsider in my own country.
I am a visual thinker and I am pleased to find the information in your fourth paragraph regarding memory recall etc.
I internalise content.. awareness.. however not the superficialities such as proscribed format , image/appearance etc ( which is often valued more highly by neurotypicals than is appreciation of content. i internalise this type of awareness after mental scrutiny so that I have a greater appreciation of the fabric of life on this planet. I guess it is an approach that acknowledges all aspects of life as relevant… much like the whole is a some of all the parts.. so a narrow view point that is exclusive cannot represent an approximation of reality as experienced on Earth.