December Clouds


Wordcloud3I got a bit of an urge to get creative with this post. Maybe it’s the holiday season.

Well, to be honest, I’m not sure copy-pasting a list of words into a word-cloud-generator counts as being very creative, but it is a change from the usual flux of words that normally fill this blog. And I do like what came out. In a way, this word-cloud is a pretty decent visualisation, I think, of my work in the past 18 months or so. And I’ve already written about how difficult I find it to visualise any aspect of my study.

This pile of words you see here is compiled of the themes of my study. Basically, every interview I did, every note I had taken, every blog-post I had read, I categorised into several themes. So for example, if Alan had told me about how his friends helped him when he became overloaded by the music and lights in a hotel lobby, I would classify that story in my notes as relating to sensory sensitivities, sensory overload, and friendship.

So the list you see here is basically a list of all the major topics my interlocutors have been discussing. The bigger ones are the ones which were more common than others. But if any topic appears here, this already means it was quite common.

In other words, this is the list of things my interlocutors – namely autistic adults – were mostly occupied with. These were the things that concerned them, interested them or worried them. So in a sense, I find this to be a relatively decent approximation of what being autistic might mean. Well, in some roundabout way, anyway.

Of course, not all these topics are interesting or relevant to everyone who is autistic. That almost goes without saying. But the whole project of trying to understand autism – and this is true whether you’re a neuroscientist, teacher, advocate or anthropologist – involves making some generalisations. Nothing applies to everyone, and some things may only apply to a few and still be important. But judging from all I have learnt so far, this word-cloud, as a whole, represents quite reasonably what autism seems to mean to autistic people.

It represents what aspects of being autistic seem to matter most.

I should add that this list is of my own making, in the sense that an interlocutor of mine did not necessarily have to utter the word ‘loneliness’ or ‘exclusion’ for me to attribute those specific themes to her account. So for example, she might have been talking about struggling to find company, or being rejected by a social group where she tried to fit in. Then it would be my judgement to deem that reflection as indicative of an experience of exclusion or loneliness. In that sense, I have as much a role in shaping this list of themes – if not a bigger role, even – than my interlocutors did. There’s something just a bit problematic, even reductionist here. I’ll admit that. Every individual’s experience is singular and unique, and lumping unique stories into broad categories is creating a pretty artificial lens through which to view things. But then again, this grouping is only meant for my own ease and convenience when searching through my notes, trying to figure out what questions I should be asking about autism, and what sort of material I might use to try and answer them. So these themes are really mere signposts. Just my own way of creating some sense of order for myself amidst the many rich and nuanced stories I’ve been collecting.

I like this list, because it paints a picture of autism as neither inherently good nor bad. As neither merely a neurological condition nor as just as social category. As both something one is and as something one does. And it colours autism, as any text dealing with it always should, with the multifacetedness and nuance that it deserves. And also, it’s pretty.

Happy Christmas, happy Hanukkah, and a good new year.


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The limits of body, the limits of language

(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

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