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Sensory strangers: Travels in normate sensory worlds

Authors:
  • Queen's University Belfast/CHUV

Abstract

Sensory experience is subject to considerable political and normative pressure, often felt, but rarely theorised. Taking as a starting point Simmel’s conceptualisation of the stranger, whose ‘position as a full-fledged member (of society) involves both being outside it and confronting it’, we propose neurodivergence as a form of Simmelian sensory stranger-hood, phenomenologically, spatially, and temporally situated as a tool for critical exploration of expressions of – and discourse around – cognitive normate sensory experience. We therefore consider neurodivergent experience less as an object of study than as a perspective. Here, the writers take the collective experiences of their own ‘bodyminds’ as a source of data. This chapter therefore consists of an auto-ethnographic project with a triple aim. First, we use this exploration to consider sensory normativity, and how this may affect the ways in which neurodivergent people are able to construct themselves and their identities. Second, we propose a reading within which the ‘sensory stranger’ provides a valuable epistemic asset whose potential exceeds the ‘particularity’ of neurodivergent experience. Finally, we are interested in considering the conditions and circumstances under which neurodiverse writing methods may be emancipatory.
Chapter 8
Sensory strangers
Travels in normate sensory worlds
David Jackson-Perry, Hanna Bertilsdotter Rosqvist,
Jenn Layton Annable, and Marianthi Kourti
Introduction
In this chapter we interrogate the normative pressures that are brought to bear
upon sensory experiences that are considered to deviate from the ordinary, to
seek out the political importance of the senses. Leaning on queer theorist Alison
Kafer’s denition of ‘political’ (2003, p. 9) we propose that sensory experiences
and our possibilities to discuss them – are ‘implicated in relations of power and
that those relations, their assumptions, and their effects are contested and contest-
able, open to dissent and debate’. The senses have been sporadically theorised and
studied within sociology; however, while Georg Simmel coined the phrase ‘soci-
ology of the senses’ in 1908, over a century later a formal sociology of the senses
is ‘a eld so new that it barely even exists’ (Vannini, Waskul, & Gottschalk, 2014,
p. 11). Furthermore, the eld has generally been more concerned with studying
the senses themselves and relationships between senses and culture than with con-
sidering the senses as a possible site of political pressure (cf. Rhys-Taylor, 2013,
p. 364). Here, we lean on Georg Simmel’s theorising of The Stranger to propose
a reading within which the ‘sensory stranger’ provides a valuable epistemic asset.
This approach echoes critical autism studies, whereby autism may be conceptu-
alised not just as a (largely pathologised) ‘object’ to be studied, but ‘as a vantage
point from which the range of humanity can be viewed’ (Murray, 2012, p. 36).
Autistic people’s sensory experiences are often pathologised, considered by
diagnostic denition to be abnormal, and by anecdote to be extraordinary or other-
worldly (Bogdashina, 2016). Considering them otherwise, as we do here, is valu-
able on several counts. An exploration of autistic bodyminds which does not take
as its point of departure an assumption of pathology, reects potentially crea-
tive ‘discrepant sensorialities’ (Serlin, 2017) that trouble sensory hierarchies and
acknowledge multiple co-existing forms of sensory and embodied perception, in
which the impact of language is ever-present. Focusing on the rst-hand sensory
experiences of autistic people can also recontextualise autism, shifting emphasis
from a model of decit to a model of neurodiversity. This shift creates an alter-
native, empowering framework in relation to which autistic people can position
themselves. ‘Autism’, as Murray (2012, p. xiii) notes, ‘is frequently talked about,
126 David Jackson-Perry et al.
but it is rarely listened to’. This is to say that ‘the vast majority of research in
autism is still undertaken on autistic people, rather than with them’ (Chown et al.,
2017, p. 1). Here, and within neurodiversity studies more broadly, we seek to
add to the epistemological and ethical case for ‘listening to’ autistic experience
but also the imperative of neurodivergent ‘talking back’ to a predominant decit
discourse, and through this ‘talking back’, to challenge the silencing of autistic
voices in the elds in which autism is studied (Milton, 2014).
The chapter is based on a cross-neuro-status collaboration, which we see as an
important part of a process of co-creating knowledge, meaning, and methods to
contribute to a deeper understanding of both autistic experience and the world in
which the lives of people of all neuro-types unfold. While we refer to categories
such as ‘neurotypical’, ‘autistic’, ‘neurodivergent’ and so on, we consider these
positions to some extent as ‘performative acts’ (Butler, 1990). Put differently,
the sensory experiences of a neurotypical individual may be perceived as having
distinct features from that of a neurodivergent one, but it is also a position that
is discursively and thus politically produced (cf. Nadesan, 2005). Thus ‘(w)hat
we (think we) know about autism – the so-called facts – are difcult to dislodge
or disentangle from the social and discursive worlds in which they are embed-
ded’ (Davidson & Orsini, 2013, p. 14). New ways of describing (and sharing)
sensory experience challenge societal attitudes and barriers that cause discomfort
for individual neurodivergent people.
Theoretical positioning
We are involved here in a ‘cripistemological’ undertaking. A cripistemological
approach involves producing ‘rst-hand, and in some cases, rst-person knowl-
edge about topics that concern disabled people and communities, broadly con-
ceived’ (McRuer & Johnson, 2014, p. 158). ‘Broadly conceived’ in this quote is
important for our purposes. Not all autistic people identify as being disabled or
are comfortable with an approach that positions them as disabled people; others
do and are. References here and later to disability theorists are therefore not a
statement of ontological positioning (that autism ‘is’ a disability, and that autistic
people ‘are’ disabled), but an acknowledgement of two points. First, of the useful-
ness of some strands of disability theory in approaching autism, and second, of
our opinion that autistic people and communities are subject to many tensions in
common with disabled communities. We consider this notably, here, in relation
to questions of (lack of) epistemic authority and discursive power relations (see
Bertilsdotter Rosqvist & Jackson-Perry, 2020).
A cripistemological approach situates knowledge production within discursive
systems of power, and privilege (Patsavas, 2014). At a time when ‘we know more
about autism than we’ve ever known, what we know is very little, and what we
know is decidedly non-autistic’ (Yergeau 2018, p. 11). From the perspective of the
neurodiversity paradigm, situating knowledge production within discursive sys-
tems of power and privilege (cf. Patsavas, 2014) means to centre neurodivergent
Sensory strangers 127
sensory experience. This necessarily requires communication on our own terms
in spaces of our own, which in our group could be referred to as a neurodiverse
‘epistemological community’ (Nelson, 1993).
To illuminate ways in which discursive systems operate, it is necessary ‘to open
up spaces of translation between researchers and others whose experiences might
otherwise be excluded from the eld of sensory studies’ (Rhys-Taylor, 2013,
p. 364). This ‘translation’ is undertaken here by a group of researchers of whom
the majority are autistic. We use the analogy of The Stranger, theorised by Simmel
as a spatial outsider, as someone arriving in a new group from a distinct culture,
a person ‘determined, essentially, by the fact that he [sic] has not belonged to it
from the beginning, that he imports qualities into it which do not and cannot stem
from the group itself’1 (Simmel & Wolff, 1950, p. 402).
It is through this distinctive subjectivity that ‘(the stranger) becomes essen-
tially the man [sic] who has to place in question nearly everything that seems
to be unquestionable to the members of the approached group’ (Schütz, 1944,
p. 502). We do not take this questioning of ‘nearly everything’ to mean that nearly
everything separates people of different neurotypes or that the stranger is ‘far’
from other members of the group: on the contrary, the stranger ‘is an element of
the group itself’, and therefore strangerhood is ‘a specic form of interaction’
(Simmel & Wolff, 1950, p. 402). Thus, the stranger and the non-strangers are not
necessarily fundamentally different, but rather the qualities inherent in the stran-
ger’s position, here the neurodivergent, make possible a questioning of the norms
of the culture that surrounds them. Not only will the stranger be able to question
the generally unquestionable, but through the stranger’s status ‘through his [sic]
distance from the common experience of the group in which he nds himself
the stranger ‘is freer practically and theoretically; he surveys conditions with less
prejudice; his criteria for them are more general and more objective ideals; he
is not tied down in his action by habit, piety, and precedent’ (Simmel & Wolff,
1950, p. 405).
However, strangers may be tied down by the ways in which the broader group
describes them (cf. Nadesan, 2005), and indeed the discursive possibilities
to describe themselves that may be foreclosed by the description of the major-
ity group. The dominant reading of autistic people in the scientic and profes-
sional literature, despite increasing critique, is still overwhelmingly that of decit
(Dinishak, 2016). This may limit the possibilities that autistic people may have of
considering themselves other than through this lens.
In the case of neurodivergent sensory experience, the very element that poten-
tially renders the stranger’s experience invalid (within the paradigm of pathol-
ogy), the representation of their experience as being outside the norm, as being
deviant, also uniquely positions that same person to question and jostle that very
norm: to travel otherwise through normate sensory worlds. We explore this ‘trav-
elling otherwise’, and in doing so question the ‘habit, piety, and precedent’ that
may exert discursive and political pressure on sensory subjectivity, thereby call-
ing ‘attention to the invisible privileges of normative practice’ (Serlin, 2017).
128 David Jackson-Perry et al.
Methods
We are variously situated geographically, neurologically, and in our academic dis-
ciplines and levels of experience. Here, we have used our own collective autoeth-
nographic data, our sensory stories, as the focal point from which to examine
and interrogate sensory norms. Following an initial day-long meeting of all the
authors, we used what we term ‘sensory story-telling’ as a form of data collec-
tion and analysis. Broadly, this involved an iterative process whereby one of the
authors started writing a free text, with no ‘guiding’ beyond ‘sensory experience’.
In this way we sought to enable the person to ‘travel’ where they wanted around
the theme rather than walk a path determined by pre-existing ideas of the group,
although during the initial day-long meeting the theme of sexuality had been iden-
tied and discussed in some detail. This form of data production was then carried
out by the other contributing authors, initially producing three texts. These texts
were circulated, added to, and commented upon by other authors during ‘virtual’
group writing rounds, two residential in-person writing retreats attended by two
contributors, and online co-writing sessions. The creation and analysis of data
thus became a form of intertextual intimacy. In this an ongoing dialogue between
author-analysers led both to an iterative development of ‘writing up results’, and
a development and rening of sensory stories – and their analysis throughout
the process.
Language: limits and possibilities
This process produced a considerable quantity of data. Much of our data reected
an awareness of the insufciency of language, and the limits and possibilities
of re-imagining neurodiverse sensory experiences within sensory normate lan-
guage, that is to say, generally medical or clinical narratives of sensory experi-
ences, which either ignore the existence of sensory divergent differences or else
pathologise them. We focus here on parts of our data that illustrate how authors
move away from normative or pathologising discourses to alternative understand-
ings of their sensory experiences.
We can hear echoes of Simmel’s stranger, who lives within, but does not neces-
sarily identify as being of a ‘host’ culture, in the following:
I often feel that everyone else has the same cultural background [to start
from] and I don’t. And that makes me feel broken, out of place, less, someone
who cannot be accounted for, included or accommodated for.
Further, we are here discussing an area that contains assumptions of normate sen-
sory processing and expression. This is clearly not simple for the stranger inter-
facing with their ‘host’ group, and may also be also a difculty between members
of such a heterogeneous group as ‘autistic people’. In our research collective we
found numerous examples of differences that could impact various stages of this
Sensory strangers 129
project, that potentially overrode neurostatus. This included factors such as dif-
fering rst languages, native cultures, and sexual/sensory experiences. Teasing
out which differences were due to neurostatus and which to other factors largely
depended, here, on the ways in which the affected individual identied these dif-
ferences. We embarked on our process through considering the limits and pos-
sibilities of language, redening and formulating new concepts through our
conversations within our group. In the following quote we see an expression of
the limits of language:
… when I am stroking my cat, I cannot tell you how that feels or why; I can
just tell you that I do it and you are left to put the rest of the pieces of what
that means yourself.
The singularity of experience illustrates a difculty of expressing ‘senso-reality
experiences’ (cf. Serlin, 2017) which are not easily approached through dominant
language:
Autistic people with learning difculties … may have a wealth of senso-
reality experiences that just cannot be approached through language, […],
because the senses are something we don’t usually talk about to a great extent
and so we are very limited discursively.
This complexity was present implicitly throughout our own writing process, and
touched on during one of our exchanges:
… [this experience] is really well described and I totally get it but it is some-
thing totally alien to my own experience. How are we [as a group, and wider
culture] supposed to know if we have similar experiences if the only medium
to communicate them with is through language which is awed as we have
seen. I could never have described [this] experience with language so I would
ask us to reconsider the language we have used here.
The limits of language are further developed in the next conversation. In the fol-
lowing quote we see how, contrary perhaps to the assumption of a common ‘us’,
the stranger carries an expectation of singularity – where an ‘invented’ language
of one’s own, a ‘neurodivergent mother tongue’, is brought to express one’s expe-
riences on one’s own terms. This brings other difculties, as one of us says in
describing communication with a partner:
how on earth are you supposed to communicate about sex in multi-lingual-
autistic-cat-anime with someone who only speaks English-cat and is now
learning autistic.
130 David Jackson-Perry et al.
This invented language of one’s own, ‘multi-lingual-autistic-cat-anime’, may be
shared by just a few, or maybe only one other person and, even then, only partially:
It’s frustrating when only one person in the world speaks your language and
everybody else can only communicate with you through your second, third,
fourth etc. language but not your mother tongue.
Another example of the difculties of dominant language to describe one’s sen-
sory experiences could be appropriating visual language while also nding it too
difcult to make it shareable with another. One of us describes how they incorpo-
rate nonverbal communication in their language, for example, anime:
… the way [the author] portrays sensory experiences has given me almost
some form of late-onset synaesthesia … [they] turn into pictures and sounds
… they created a vocabulary in my head that is in pictures and sounds (not
words) that are attached to sensory experiences. If you ask me how my body
feels, the only thing that comes to my head is this [see Figure 8.1]:
Figure 8.1
Sensory strangers 131
On the other hand, they may nd it too difcult to make the translation from
this language of one’s own into a shareable language, and choose to remain
silent:
Because I have no other way to explain to you how my body ripples touching
each other feels for me and that I don’t like it. But it takes a long time to go
from a picture to words, so I just don’t talk about it.
Synaesthesia (whereby information generally perceived and/or expressed via one
sensory or cognitive pathway is experienced via another pathway) is more com-
mon among autistic than non-autistic people (Ward et al., 2017). Furthermore,
some autistic people are multiply neurodivergent, which might make nding a
shared language even harder. While this invented language of one’s own works
as a way of pointing out the limits of sensory normate language, it may result in
silence, a sense of resignation, an experience of a non-shareable language about
one’s sensory experiences in social contexts.
However, in different ways, two of our writers sought out alternatives to the
normative language of diagnosis by drawing on their sensory experiences, one
through accessing online autistic communities and the other seeking out fullling
sensory experiences via a BDSM2 lifestyle and sensory integration therapy. In
this way, these writers felt that they emancipated themselves from the stigmatisa-
tion that diagnosis may inict. This was not a simple thing to do, and it took both
emotional labour and access to specic communities and languages, both online
and ‘in real life’. This brought with it a similar tension concerning hierarchies
of knowledge. For example, biomedical language of diagnosis has at least ini-
tially a high level of epistemic authority (Oikkonen (2013, p. 284). In relation to
that more dominating language either the ‘language of one’s own’ or community
languages that have been developed in certain alternative epistemological com-
munities, such as the autistic community (Belek, 2019) or afrmative professional
communities, may nd it hard to gain credibility.
Indeed, diagnosis, and the biomedical narratives on which it leans, can be both
‘a tool and a weapon … a source of knowledge, sometimes trustworthy and other
times suspect … shaped by particular belief systems, useful and dangerous by turns’
(Clare, 2017, p. 41). Here we see echoes of Garland-Thomson’s (2005, p. 1567)
rewriting of ‘oppressive social scripts’ in order to reimagine a disabled self. She
describes ways in which the biomedical narrative ‘casts the variations we think
of as impairment as physiological failures or aws’. A response to this can be to
formulate ‘a logic that allows people to claim the identity of disabled without hav-
ing to conceive of it as a diminishment of the self’. This is increasingly the case in
emergent research carried out in neurodivergent circles (Chown et al., 2017), which
is both a product of, and feeds back into, autistic communities as well as commu-
nities of afrmative professionals. The diagnosis of autism is conceptualised as a
recognition of a way of being in the world that, while it may well carry greater or
132 David Jackson-Perry et al.
lesser degrees of disadvantage, also holds emancipatory and explanatory value for
individuals:
Finding out that out [that I was autistic] gave me the language to describe
many of my experiences, which I am very grateful for.
In this way, a sensory self initially arising from a biomedical decit model as
being marked with sensory decits, is strategically reimagined as a sensorially
different self, intelligible in its own right (Belek, 2019), but not without struggles
for rights of interpretation. The following expresses this struggle, but also a sense
of triumph: community language or afrmative professional language works as an
enabler of the expression of alternative sensory experiences, or the possibilities of
‘owning the words that describe my own experiences’:
This was an interesting process for me, having originally been exposed to
autism theory in academic settings as a part of my Special Educational Needs
undergraduate programme for four years, only to discover my own autistic
identity after a few hours of watching YouTube videos of autistic people talking
about their experiences. This initiated a complex navigation of epistemological
locations, between the online autistic groups and the professional books and
articles I was familiar with, the negotiation of which was the closest approxi-
mation [I had] to my [own] experiences and, indeed, the ‘entity’ of autism.
This comment reects the experience of epistemological travelling; from the
location of an outsider within an autistic community, rediscovering themselves
and their own autism with the support of autistic community language. As Belek
(2019, p. 39) puts it,
(O)btaining an autism diagnosis leads autistic adults to engage with other
members of autistic communities and to become exposed to such relevant
systems of knowledge as the language they use, the ideologies they subscribe
to, and the discourses they produce.
Going from ‘being talked about’ to being an active participant in the conversa-
tion about their own autistic subjectivity, or what we refer to as ‘talking back’,
held powerful possibilities to rethink their life and the agency they felt they could
wield:
Figuring out little by little not only what my relationship with myself was,
but also contextualizing my relationships with others, the ways in which oth-
ers storied me (e.g. as someone who is ‘talented’ in their work with autistic
students). It became a powerful source of agency in my personal life, whether
I felt able or empowered to exercise it or not. [It became] an epistemologi-
cal and discursive location that gave me the freedom to approach my life
phenomenologically from the events, rather than theoretically from abstract,
Sensory strangers 133
and very awed, theoretical frameworks I was familiar with. Ultimately
[it empowered] me in the process of owning the words that describe my own
experiences.
Similarly, through the language of sensory integration assessment within an
afrmative professional discourse, another one of us recalls the impact of their
sensory assessment report, which described the contributor as having ‘vast issues
with sensory overload’. This recognised and accepted their ways of achieving
sensory regulation, including engagement in certain sexual behaviours, and so
validated the individual and their choices. The language of the assessment not
only provided them with:
… practical exercises that eventually led me back to a place of wellness both
in my body and in my brain, [and] it also provided me with validation about
why I had done the things that I did and why I continued to crave them.
This supported the practices that helped and afrmed their knowledge of how to
cope with sensory experience. This is similar to the rst story about the impact
of epistemological travelling from a pathologising epistemological community to
an empowering one. Here, the alternative language from afrmative professional
communities made it possible to redene themselves and their sensory experi-
ences; from being perceived as pathological and possibly irrational ‘problem
behaviours’ to rational responses to sensory needs. They said:
Furthermore, the explanation for the behaviours that I had engaged in to
meet my sensory needs throughout my life that had been labelled in turn,
‘sick’, ‘perverse’, and ‘strange’ was suddenly clear to me. The kink that I
had engaged in had always been a source of great joy and pleasure but also
conict, as certain partners of mine have not shared them, and because of
the opportunities for bullying and blackmail available to those who came to
know of what I did. Although my kink did not manifest as a direct part of my
autistic experience I too, like the other authors, have been caught between
the attitudes and beliefs of a niche community, the BDSM community, and
the psychiatric interpretations of my behaviour that were reected in wider
social attitudes about kinky sex and life style choices.
During analysis, this contributor specied:
I did not reimagine the sensory report in an emancipatory way; rather the
whole process was emancipatory and provided a positive and alternative nar-
rative to the one I had been stuck with up until that point which was based
upon an ICD-10 diagnosis of high-functioning autism.
In this way, behaviours that are diagnostically considered to be restricted and
repetitive, often either described as non-functional (Ghanizadeh, 2010) or
134 David Jackson-Perry et al.
purposeless (Subki et al., 2017), are recognised as constituting valid sensory
management strategies (Cunningham & Schreibman, 2008). In terms of the
stranger, this implies the usefulness of collaboration between the stranger and
non-stranger ‘allies’: while the stranger has the potential to be ‘freer practically
and theoretically; (surveying) conditions with less prejudice’ (Simmel & Wolff,
1950, p. 402), this freedom may require an interactive emancipatory process,
an engagement with discourses that open other possibilities to decit readings.
Previously, we saw how this was initially accessed via online autistic communi-
ties; here it is through interaction with a professional who recognises autistic
experience as valid. This recognition brings far-reaching positive consequences:
Finding out about why I did the things that I did not only gave me a more
positive identication with it, I also understood why for the rst time ever in
my life. This enabled me to nd positive alternatives that created less conict
within my intimate relationships and family dynamics.
This understanding of their own actions thus allowed for a ‘self-reading’ out-
side that of decit. Similarly, the former contributor moved towards negotiating
‘the closest approximation to my experiences and, indeed, the “entity” of autism’,
beyond language:
I do what feels good, with enough condence to know that I know what I
need, far better than doctors, diagnostic manuals, and social stories. I’ve got
myself here […] via a sensory story that very few people could comprehend.
I am beyond the denition of most people, even beyond myself using lan-
guage, despite instinctively feeling like I’m guring out the edges.
A sensory experience that seems to reect ‘a ‘reality outside language’ may
accordingly also be the solution to the very difculty it creates: kink, bondage,
submission all became ways of solving this sensory conundrum, using a language
that went beyond explaining’. Here, the act of submission became a linguistic
‘replacement’, a way of sharing sensory experience with others, in certain con-
texts, that went beyond the need for language and instead directly accessed the
body’s sensory ability to respond upon command.
For me the submissive act becomes a way to share a sensory experience that
is usually locked up within myself. It becomes a clumsy way for another to
access what I have. They are not able to speak my language or have my cultural
understanding but can clumsily interpret and direct what I experience through
their control of my body and senses. It allows me to unlock the sensory world
in which I exist and allow others rstly in and [it also allows me] to ‘forget’
about some of the sensory input that I always have to process through the act
of sensory deprivation committed by another on me. The important thing is
this latter part, I don’t have to think about it, it takes no effort. It is a relief.
Sensory strangers 135
To get to this place took ‘the loss of my rational mind and desire to live, to under-
stand these things, because guring them out was part of guring my way back
out of the darkness, into light and meaning again’. Meaning was created from
sensory, not rational, language, thereby using nonverbal sensory experiences as a
primary route back to wellness and self-acceptance.
This speaks to me of a language that is specic to the time, space and people
involved in this shared experience/creative linguistic process and reects the
unique way in which autistic people take sensory and environmental data that
is very specic, instead of relying on past experience and mental knowledge
schemas as NT people do.
This last quote illustrates the stranger’s possibility of moving away from what
may generally be accepted as truth, one way in which the stranger ‘is not tied
down in his action by habit, piety, and precedent’ (Simmel & Wolff, 1950, p. 405).
The stranger may be free – at a cost – to hold an alternative perspective and expe-
rience that may illuminate the commonly taken-for-granted. The stranger, here,
forms new ways of nonverbal communication in order to make these alternative
perspectives comprehensible and legitimate in different worlds, such as autistic or
professional communities. As we have seen, this may be done through redening
and reimagining concepts and experiences, but also through epistemological alli-
ances between epistemological communities.
Reflection on process – implications for
methodology
Here we reect upon some of the challenges and possibilities we encountered
during our writing process. While our process did not necessarily set our work
apart from neurotypical methods, we feel that there is a difference in the sen-
sibility of this process. This is based on acknowledging and addressing needs
from a shared assumption not of abilities and disabilities, and of different ways
of functioning and the impact of different previous experiences in the group
dynamic.
Most of us in the writing collective belong, or we have belonged to various
degrees at differing moments in our lives, in BDSM spaces. Through this, some
of us experienced a particular form of a shared senso-reality, an ‘alternative social
ow’ during the writing process. This manifested itself in various ways. Most
supercially it led to our initial interest in exploring BDSM experience in this
chapter. However, more profoundly, our various positions in the BDSM world
(as submissives or dominants, for example) started playing out during the writing
process, and during both the initial one-day meeting and the residential retreats
some of us felt a powerful sense of connection with each other and with our shared
memories of BDSM scenes in which we had participated. This shared social ow
feels like a sensory experience, as one of us puts it ‘it is as though the air between
136 David Jackson-Perry et al.
us thickens and conducts our thoughts, emotions, and needs without passing via
language or cognition’, thereby functioning as nonverbal communication within
the group. While some of us experienced this through our shared BDSM practice
it could also conceivably be experienced between individuals sharing any intense
interest, for example at an event during an autistic conference where autistic peo-
ple get together to enjoy collective stimming and play with LED sparkly toys.
To return to the notion of ‘travelling otherwise’ through sensory experience, this
intense collective social ow brings with it the sense of travelling with others who
co-create meaning not through language but through sensory experience, similar
to the experience of the contributor discussing their kink experience in their ear-
lier sensory story.
However, while this can be a powerful tool in a group writing process, it may
also be difcult to manage, a sort of ‘collective experience of monotropism’ (see
Murray, Lesser, & Lawson, 2005 for discussion of monotropism) that is so excit-
ing and all-consuming, so deeply intimate and ‘completing’ that it becomes dif-
cult to leave as a group. This intense immersion in an act, a moment, or a process
brings many advantages and can contribute to autistic peoples’ quality of life in
various ways (McDonnell & Milton, 2014). However, when shared by some
members of a group, but not all, in this way it can also be exclusionary, causing
the shared nonverbal communication used by contributors in the ow to become
unavailable to those outside of the ow.
This sense of exclusion was present at various stages for various members of
our group. At an early point in our co-writing, two contributors were having dif-
culties in their own lives, and were therefore unable to participate to a great
extent in the writing process. This meant that the two other members (who are also
friends/collaborators outside the context of this writing group) spent considerable
time together working on this project. This had various consequences. Our itera-
tive process became one in which the two people who were initially less involved
in writing up sometimes felt a stranger-like distance. As one of our contributors
commented on reading an earlier draft,
we are of the group and [share?] the perspective of the authors and data but
remain outside of the intensive writing process you both undertook and so
retain a certain objectivity and different perspective [insider/outsider] to the
methods you describe here.
Thus, as with the stranger, being a ‘full-edged member [of a group] involves
both being outside it and confronting it’. This required the two authors who spent
considerable time together to revisit their analysis, to question their assumptions,
and to reopen what they had thought of as nished. In this way, the theoretical
notion of the stranger took form within our writing process: given the level of
epistemological intimacy, and time, spent together by the two contributors, the
other authors sometimes felt that they assumed parts of the role of Simmel’s stran-
ger, being of the group of authors and data creators, and yet remaining spatially,
Sensory strangers 137
temporally, and sometimes emotionally and conceptually outside of the intensive
writing process. The distance that had to some extent been created was there-
fore sometimes personally and relationally difcult, but also potentially powerful
epistemologically.
Writing as a neurodivergent group required considerable exibility. The mem-
ber of the group who has the most difculty with exibility, who feels a ‘rigid
need for tight initial planning’, is the only contributor who is not identied as
autistic. However, within this group, that rigidity was also seen as something that
needed to be taken account of, part of an ‘increased awareness of the needs of oth-
ers than might be expected to work in an NT group’ as another contributor put it.
This awareness and negotiation of individual particularities played out on vari-
ous fronts. During the work process we had several Skype meetings. In these, we
each had differing needs (for example, one of us needed to ‘pace’ to think, another
found the moving image difcult to process; one needed visuals, another found
them overwhelming at moments). This required ongoing development of ways of
communication and working together: for example, the division of the group into
smaller entities during meetings (for example one-to-one-meetings) or a method
of virtual ‘co-writing’ where two of the authors met simultaneously on Skype and
worked together with the text in a shared google docs.
Many neurodivergent people struggle with their mental health (Grifths et al.,
2019), and this was also the case for members in this group. This required that
different members of the group picked up the reins so as not to ‘disqualify’ anyone
from participating, but this had to be approached pragmatically. This led to a level
of mutual care that is perhaps uncommon in academic writing, but which in an
autistic co-writing experience may be part of the process. It also underscores that
perhaps a ‘standard’ external academic process (of, for example, a relatively tight
and inexible deadline schedule) may not always sit easily with a neurodivergent
group of contributors.
Concluding reflections
From our writing process, new possibilities and challenges arose, with conse-
quences for both research method and theorising. Starting with a common interest
in exploring our sensory experiences in relation to sensory normate worlds and
thinking, we found ourselves in somewhat new terrains, lacking both in clear
methods and applicable theories, resulting in a pragmatic development of both
methods and theoretical concepts ‘as we went’.
Conceptualising The Stranger as an epistemic asset has been useful to us on
these two counts. Methodologically it has allowed us to take some distance from,
and to observe the effects of, the ways in which ‘strangerhood’ may play out in
the writing process. This came with the sometimes painful awareness of the dif-
culties and emotional challenges present between members of our writing col-
lective, whereby some of us, for a variety of reasons, became ‘strangers’ within
our group. While this brought challenges, it also brought into play the usefulness
138 David Jackson-Perry et al.
of the stranger position, requiring that two authors who spent considerable time
together revisited assumptions they had made from working ‘at the centre’ of the
process.
Theoretically, too, we felt we advanced through our use of the stranger as a
framework, which enabled – indeed required – distance from a decit view of
autism and in so doing permitted the emergence of two ‘conditions’ that may be
necessary – or at least useful – in a process of autistic reconstruction. In a previ-
ous paper (Bertilsdotter Rosqvist & Jackson-Perry, 2020) two of the contribu-
tors explored the difculties for individuals in describing their own (sexual)
experience outside existing pathologising discourse. They asked: ‘(W)ithin the
context of a body of autism literature which is generally decit-driven, is it then
possible for autistic people to imagine themselves and their intimate experi-
ence other than through decit?’ We noted here how one of our contributors
was able, through their autistic community, to approach their own experience
from a position of subjectivity, to move from this position to an understand-
ing of that experience, rather than dening the experience through pre-existing,
decit-based theory. Echoing Belek (2019, p. 39) when he notes that the ‘goal
and challenge of many of my autistic interlocutors is to nd ways to articu-
late their sensations’, one of us noted the importance of a personal rethinking
process; ‘the process of owning the words that describe my own experiences’,
which when successful allowed ‘a more complete and meaningful experience to
emerge’. This rethinking process, which included a process of talking back to
sensory normate conceptualisations, was enabled by access to – and identica-
tion with – autistic-created knowledges via both online and ‘in real life’ autistic
communities, which may therefore constitute a rst ‘building block’ of autistic
identication.
Second, we noted the important role that may be played by professional
‘allies’. The willingness of professionals to question and overcome decit-based
approaches, rethinking their theoretical knowledge in the light of their clients’
autistic subjectivity, can be a powerful tool. Rather than the imposition of decit,
this brings an acknowledgement of difculty while recognising the validity of
autistic ways of working with those difculties. In our contributor’s example this
meant considering kink, bondage, and submission not as further examples of their
decit, but as meaningful tools with which they knew, and navigated, their sen-
sory needs and desires, an approach that brought afrmation to the autistic client
and increased understanding to the professional.
In both these examples, a highly personal process of identity construction
becomes part of an epistemological, and indeed political, shift. As strangers, con-
tributors played the ‘go-between’ between worlds of autistic subjectivity, autistic
community, and professional knowledge. Within research, we are increasingly
seeing echoes of this type of endeavour of centring autistic subjectivity, a ‘talking
back’ that positions autism as a place from which knowledge can be produced.
However, we have seen here, even within a small group with shared ambitions
and neurostati in common, that we have had to recognise the conditionality of
Sensory strangers 139
sharing, of mutually exploring and discussing sensory experience. This may well
be a major challenge that presents itself to neurodiversity studies as they move
forward: ‘talking back’ is one thing, readily theorised through feminist, bisexual,
and queer theories. Being heard, and then understood on our own terms is
something quite different.
Notes
1 Reecting the period in which these authors were writing, the stranger was written of as
‘a man’, using only masculine pronouns. We have retained original quotes here, know-
ing of course that the stranger is not of any particular sex or gender.
2 BDSM refers to bondage/discipline, domination/submission, sadomasochism.
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