Download Autism and Affect: An Exploration of Emotionally Disordered

Joyce Davidson
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“More labels than a jam jar…”
The Gendered Dynamics of Diagnosis for
Girls and Women with Autism
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Joyce Davidson
Department of Geography
Mackintosh-Corry Hall
Queen's University
Kingston, Ontario
Canada, K7L 3N6
Email – [email protected]
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Joyce Davidson
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“More labels than a jam jar…” The Gendered Dynamics of Diagnosis
for Girls and Women with Autism1
Abstract
The term autism, coined by Bleuler in 1911, derives from the Greek autos (meaning
‘self’) – it connotes separation, aloneness - and descriptions of those diagnosed with
Autistic Spectrum Disorders (ASDs) frequently suggest they are very much apart from
the shared, experientially common space of others. The subjects of clinical literature are
very often male children, perhaps unsurprising given the recognized need for early
intervention, and the fact that studies suggest four times as many boys receive an ASD
diagnosis as girls. This understandable bias does however mean that a significant
minority are often overlooked, and this paper focuses on the experience of those girls and
women who frequently struggle to obtain diagnosis and treatment for a predominantly
male – and thus for them, contested - disorder. Drawing particularly on autobiographical
accounts – including the narratives of Temple Grandin, Dawn Prince Hughes and Donna
Williams – the paper reveals a strongly felt need to communicate and thus connect their
unusual spatial and emotional experience with others, in a manner not typically
associated with autism. It explores the gendered dynamics of diagnosis and complex
challenges of ASD life-worlds, and the ways in which ASD women use social and spatial
strategies to cope with and contest the expectations and reactions of neuro-typical others.2
Introducing Autistic Experience
It is well known that individuals with autism and autistic spectrum disorders (ASDs)
experience and express involvement with the world in a way that is not ‘typical’, and
published accounts imply such different social and spatial dynamics that they might be
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thought to imply an ‘other’ world. The author of a recent text for family and carers writes
that ASD individuals “live in a mysterious world of direct perception and immediacy;
they see a world without metaphors […and understanding this world] means traveling to
a ‘foreign country’ and learning a new language.” (Szatmari 2004: viii) Jacket reviews of
the text claim that it takes the reader on “a journey through uncharted terrain”, and such
metaphors of exploration highlight a powerful sense of separation between the world of
the familiar, the taken-for-granted and everyday, and ASD worlds that, as this author
states, “revolve around a different axis” (Szatmari 2004: 16). Szatmari suggests that
understanding this alien land requires work of an imaginative as well as explorative
nature: he says, “the ASDs are so mysterious, the behaviours seemingly so inexplicable.
It takes a feat of imagination to leap across the boundary of our mind to the mind of the
child with autism.” (2004: xi) In this paper, I want to suggest that a spatially sensitive
interpretation of ASD women’s own narratives – that is, re-presentations drawn from
autobiographical literature - might help facilitate that leap. It may thus further
understanding of the production and experience of contested emotion and space, and
provide insights into the gendered dynamics of diagnosis.
This preliminary study of textual characterizations of ASD is motivated by a feminist
social and health geographer’s compulsion to understand something of the quality and
extraordinary variety of women’s embodied, and somehow disordered, emotional
encounters with the world, an interest emerging initially from experience of panic and
subsequent study of its role in agora and other overwhelmingly ‘feminine’ phobias. I’ve
felt, in other words, that the material substance of the world shapes and is shaped by
emotion – the phobic object ‘causes’ fear, but fear ‘makes’ the world a more frightening
place. The emotional texture of our lives is thus continually reconstituted through
dynamic interaction across shifting boundaries between people and places, and I want to
begin to investigate the possible relevance and resonance that such geographical insights
might have for understanding diagnosis, experience and treatment of women with ASDs.
The text-based qualitative approach to the subject matter differs considerably from the
intensive involvement with individuals and groups that has characterized the majority of
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my own and others’ work on emotional disorder (Bankey 2001; Davidson 2003; Parr
1999). Empirical reliance on the written rather than spoken word may, at first glance,
seem less appropriate for the conduct of explicitly feminist research (Moss 2003). It is,
clearly, communication at a distance, both materially and metaphorically. Almost by
definition, it allows less space for the development and expression of personal
involvement and empathetic interaction. However, I would argue that this method is in
fact uniquely suitable for research on ASD experience, a conclusion supported by
‘participants’ themselves.3 Gunilla Gerland (2003: 53) for example, writes in her
autobiography that “[e]xpressing words in writing was much easier for me than taking the
long way round, as I experienced it, via speech.”4 Dawn Prince-Hughes, in the preface to
an edited collection of ‘personal stories of college students with autism’, is similarly
emphatic about the limitations of speech, and repeatedly states that writing is the best
way for an autistic person to communicate: “It allows time to form one’s thoughts
carefully, it has none of the overwhelming intensity of face-to-face conversation, and it
affords the writer space to talk about one question or thesis without limit” (2002: xiii).
Stressing a perceived need among ASD individuals for research on their experience, she
refers to writings in the anthology as self-produced “ethnographic narratives” containing
“their truth. Our truth”. Such “autistic autobiography is rare”, she states, “and in my
opinion valuable” (Prince-Hughes 2002: xi): “There is simply no way for nonautistic
people to gather this kind of information through questionnaires or interviews, or through
reading what nonautistic people have said about us” (Prince-Hughes 2002: xiv).
The view that insufficient and / or inappropriate research has taken place on ASD
women’s experience is relatively common in writings I’ve encountered, as is the sense
that there are right and wrong ways to address this absence. In the introduction to Women
From Another Planet: Our Lives in the Universe of Autism, Jean Kearns Miller (2003:
xxiii) writes: “Given the relative inattention of the research community to women with
AS and our own dismay at the inadequacy of diagnostic description, especially as it
pertains to women, we began the process of self-definition through interaction with each
other… We were, in effect, observer-participants in our own ethnography.”5 The women
involved in the project explicitly challenge the reader to “look beyond the clinical
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contours of their experience”, and I aim to take seriously this invitation and
recommendation from insider experts in the account that follows. I hope eventually to
engage some of the authors in discussion about my outsider interpretations of their autoethnographies.6 However, for the time being at least, I feel relatively comfortable in
‘using’ their words, for a purpose I imagine most would approve of; namely, the attempt
to communicate and further understanding of their personal and often painful experience.
Highlighting these minority reports of an overwhelmingly male disorder (see below) does
however demand a degree of background involvement with the largely masculinist - and
so alien and alienating – body of clinical literature.
Clinical Contours and Beyond
The term autism, coined by Bleuler in 1911 (Stanghellini 2001) derives from the Greek
autos (meaning ‘self’) – it connotes separation, aloneness - and in fact, one of the most
common complaints of parents seeking diagnosis is that their child acts as if “in a world
of his own” (Daley 2004: 1327), descriptions that suggest the child is very much apart
from the shared, experientially common space of others. The male pronoun used in
clinical accounts is clearly not incidental, given that studies suggest four times as many
boys currently receive an ASD diagnosis as girls (Gillberg and Wing 1999).7 As we’ve
seen, I’m especially interested in the minority, who, as we might well imagine, could
struggle to obtain a diagnosis for and then cope with a predominantly male disorder. As
with the emotional geographies of women’s health that I’ve done in the past, the work I
propose to do on ASDs won’t intervene in on-going, important and often fascinating
clinical debates about the disorders’, for example, etiology, incidence and prevalence.
Social scientific perspectives are obviously different, but nonetheless valuable, and so far
surprisingly scarce. Recent years have seen conceptualizations (and arguably
experiences) of other disorders benefit from geographical interventions, including
disability (Chouinard 1999), chronic illness (Moss 1999), mental ill-health (Parr 1999;
2000: Segrott and Doel 2005), eating disorders (Dias 2003) and other ‘a-typical’, often
gendered and contested, embodied and emotional experiences (Bondi, Davidson and
Smith 2005). (As we’ll see, many such disorders, including, for example, anorexia,
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phobias and obsessive compulsive disorder, have in fact been among the misdiagnoses
obtained by ASD women.) However, despite this increasing attention to socio-spatial
aspects of embodied and affective disorder, ASDs themselves have been largely
neglected by social scientists (but see Daley 2004; Gray 2001; 2002; 2003 on parents’
perspectives) and little is known about what it means and how it feels to experience and
cope with ASDs beyond the immediate realm of affected individuals. I want to suggest
that feminist geographers might inform and enhance understandings of enigmatic ASD
experience of the world, offering theoretical as well as therapeutic insights that might
benefit those directly involved, whether personally or professionally.
Clinical and lay conceptions of autism and diagnostic criteria have, inevitably, changed
over the years since Leo Kanner published the first account in 1943, closely followed by
a similar study by Hans Asperger in 1944 – he described children who seemed as though
they had just fallen from the sky - what remains relatively stable is the view that autism is
part of a wide spectrum of disorders characterized by “impairments in social and
communicative development, and by the presence of repetitive and routinised behaviours,
in preference to imaginative and flexible patterns of behaviour and interests” (Charman
2002: 249). Autistic traits are often referred to in terms of the “triad of impairments” social, communicative and behavioural. Accounts suggest that the ASD child; spends
more time with objects and physical systems than with people; communicates less than
other children do; shows relatively little interest in what the social group is doing or
being part of it; and has a strong preference for experiences that are controllable rather
than unpredictable (Baron-Cohen 2000: 490). It won’t have escaped our notice that these
traits and their discursive representations are culturally coded as masculine rather than
feminine. In a fascinating and gendered twist on recent clinical approaches, director of
the Cambridge, UK based Autism Research Centre, Simon Baron-Cohen, argues that
autism can be understood in terms of ‘essential difference’ and is in fact an example of
what he terms ‘the Extreme Male Brain’ (EMB). His populist book on the subject – it has
glowing jacket reviews by the Washington and National Posts – is crying out for feminist
critique, but time and space preclude….
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In considering, first, the social and communicative aspects of impairment that position
ASD individuals in their own worlds, descriptive accounts emphasize an obvious
inability to employ the usually intuitive language ‘of hand and eye’. Non-verbal
behaviours – gestures, eye contact, ‘body language’ - communicate little if anything to
the ASD individual, who often finds others’ ability to understand and respond to such
‘cues’ entirely mysterious. Any supplementary input to conversation beyond the strictly
verbal and straightforward (non-metaphorical and preferably factual) - only serves to
confuse, to obfuscate rather than enrich or clarify the respondent’s intentions.
The literature suggests that factual information, and often in large quantities, can be taken
on board at an intellectual level, imported wholesale into the ASD experiential island, but
it rarely makes broader connective ‘sense’. Few ever learn to ‘intuit’ information from
social cues independently, but rather learn to deduce information by entirely logical
means. Autistic people do not usually, therefore ‘get’ small talk, and the inability to
engage in ‘gossip’, constructed as central to the stereotypically feminine social identity,
can present particular difficulties for women. While many can learn to ‘make the right
sounds’, such that questions can be asked and apparently appropriate answers given, there
are usually clear indications to the non-autistic person that information or understanding
cannot be said to have been ‘shared’. The ASD individual remains alone in that a-socially
separate sphere.
To give an illustrative example, I’m going to draw here on the writings of probably the
most famous autistic author, Temple Grandin – a high functioning and highly
accomplished academic – who writes at length and often eloquently of her struggle to
learn, cognitively, to ‘read’ and respond to others appropriately. As a child trying to
figure out why she didn’t ‘fit in’, she was aware that “something was going on between
the other kids, something swift, subtle, constantly changing – an exchange of meanings, a
negotiation, a swiftness of understanding so remarkable that sometimes she wondered if
they were all telepathic.” (Sacks 259) Grandin has famously described herself as feeling
like ‘an anthropologist on Mars’ – Oliver Sacks used her phrase to title his popular book
– as trying to ‘figure out the natives’ or ‘aping human behaviour’ with its seemingly
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magical unspoken elements. Grandin thus doesn’t understand others, but she can partially
compensate intellectually, by bringing “computational power to bear on matters that
others understand with unthinking ease”. She has to “‘compute’ others’ intentions and
states of mind, to try to make algorithmic, explicit, what for the rest of us is second
nature.” (258)
Donna Williams also, and fairly typically, uses technological metaphors to convey
something of ASD women’s communicative coping techniques: “Like files in a
computer, people can mentally store copied performances of emotions, retrieve them and
act them out. But that doesn’t mean that performance is connected to a real feeling or that
there is any understanding of a portrayed emotion beyond the pure mechanics of how and
possibly when to emulate it” (Williams 1995: 214). Mind-reading and decoding the inner
states of others is clearly extraordinarily hard work, and Grandin describes her still
frequent feelings of being “excluded, and alien” (260). She can try to act, but never feels,
or fits in, like a native.
‘Acting normal’ can thus be a purely imitative project, and authors refer to learning the
art of mimicry in order to perform an(y) identity and survive the complexities of a
necessarily social and unbearably demanding world: “I was an empty jar that could be
filled with anything. People’s behaviour simply fell into the jar and I used it to try to feel
myself someone, like a real person” (Gerland 2003: 209). The acts of imitation are,
however, never managed entirely successfully and at no point is the project completed.
While ASD individuals differ markedly from each other in their ability to accomplish and
perform normality, none do so without enormous and exhausting effort, and few fail to be
marked out as different and labeled accordingly, always detrimentally: “All the years of
watching and studying what the normal people were about, I created my own piece of
normality. In the eyes of my co-workers they thought of me as the crazy lady, bag lady or
a drug user… Trying to be normal made me act like a nut…but at least [my co-workers]
accepted me as some kind of person, even if some of them had me pegged as a big coke
head.” (Lawson 2005: 29) Being anything or anyone is better than being nothing or
nobody.
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Enacting normalcy may present particular challenges to women with ASD - challenges
more easily avoidable for men - given the gendered stereotypes and expectations around
communicative styles. That is to say, women’s speech and body language is culturally
constructed around co-operation and connection rather than competition and distinction,
and doing gender appropriately for women arguably involves being more sociable,
sympathetic and insightful. Obviously, ASD men also have difficulties with social
relations and spaces where ‘mind-reading’ appears to take place. However, it is widely
considered less permissible, more deviant, for women to perform inadequate interaction
in social (skills-based) spheres. As Miller explains:
“Consider how much of femininity is about taking a precise reading of all the social
currents of a given moment and aligning (and if necessary, abnegating) oneself to serve
the stability of the moment and the wellbeing of all those who inhabit it, whether this
means sniffing out the exact social dress code… the subculture, and occasion, or reading
all the social clues in a group and occupying the niche most guaranteed to soothe,
nurture, and harmonize all who are in it. This is not the role our wiring has created for us”
(Miller 2003: xii).
The everyday ‘telepathy’ that takes place between typical individuals of both sexes is an
inexplicable mystery to those with ASDs, and Jane Meyerding (in Miller 2003: 159)
describes her own painful awareness of difference and disability at an early age. Those
around her simply knew “how to be little girls together…as if everyone else had studied a
script and learned their parts beforehand.” She was baffled by the “natural ease with
which they acquired their gender identity from the culture around them” and feels that
our culture makes it harder for girls and women to survive without such mysterious social
skills than it is for boys and men. Such potentially significant experiential and cultural
considerations have been absent from clinical accounts, which invariably model the ASD
individual in gender ‘neutral’ (and so singularly male) terms.
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In a well-documented clinical attempt to understand why such imitation and ‘active’
(rather than ‘natural’) learning should be necessary - to ‘unravel the mysteries of autism’
- Uta Frith and others have developed a theory of ‘central coherence’. This suggests that
non-autistic people are able, arguably compelled, to draw diverse aspects of experience
and situations together in a way that forms a coherent pattern. This ‘drive’ for central
coherence entails a tendency to make things meaningful by integrating information into a
larger system or context, such that deeper meaning can be derived from the gestures and
expressions of others, when combined with what they simply ‘say’. In stark contrast, it is
characteristic of ASD individuals, as we’ve seen, not to connect linguistic and
supplementary information with a wider context, but to perceive it discreetly. This can
apply at all levels, to all kinds of perceptions, and at all spatial scales, including the
supposedly intimate human face, which can be perceived in discrete parts. If you can
imagine the disturbing image or rather sense of disjointed mouth, nose and so on, this
helps us understand why eye contact can be so frightening and impossible to maintain –
faces have been described as “blurry objects exploding with invasive stimuli” (PrinceHughes 2004: 169). ASD individuals can be thought to look through other people, as if
they weren’t there, and we might think that indeed those others don’t have any meaning
in the autistic person’s world. Faces often make little ‘sense’, and if we consider the
common shared space of communication and understanding with others that facial
expressions often facilitate, we can perhaps get a sense of the extent of taken for granted
shared space from which those with ASDs are excluded. Typical individuals rely heavily
on such information in everyday life, and such perceptual difference can help ‘us’ (nonautists) understand behavioral patterns and difference, as well as atypical – ‘unfeminine’
- social, communicative experience.
Because they are often more sensitive to sensory stimuli, the worlds of ASD individuals
can be overwhelming - many notice everything, often in painful, indiscriminate detail –
as one writer states, they might not be able to see the wood for the trees but they can see
each tree in its minute and exquisite complexity. As a consequence of what’s described as
a sensory onslaught, personal space can become over-populated with anxiety provoking
stimuli that cannot be processed and properly placed, but cannot be blocked. Descriptions
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include accounts of sensations heightened to an excruciating degree, and complete lack of
modulation of senses, such that ears are helpless microphones, transmitting everything,
irrespective of relevance, at full, overwhelming volume. Sight and smell too can clash to
create a multi-sensually overwhelming attack on the self, and even the light wellintentioned touch of another can be unbearable. Prince-Hughes (2004: 67) writes that “I
lived in a kaleidoscope […] looking down a narrow tunnel at broken colored fragments of
people and dreams”. Williams offers a remarkably similar account of ASD tunnel-like
experience in her book Nobody Nowhere (2002: 74): Explaining that ordinary physical
environments could be felt to disappear, she writes that “perceptually, the hall did not
exist. I saw shapes and colors as it whooshed by.”
Perhaps surprisingly, given the central coherence account referred to above, both of these
ASD authors describe a reliance on context for a sense of security amidst this spatial and
sensual confusion. Prince-Hughes thinks she experiences attachment to places like others
do with people and Grandin describes being upset when a favourite aunt died, but
absolutely distraught when she found out “that her ranch was for sale. The idea of the
loss of the place made me grief-stricken”. I think we can understand this attachment to
place in terms of a desperate need for some sense making context of stability and
predictability in a world peopled with never-ending, frightening surprises. PrinceHughes, for example, writes: “often I would not accept changes, and if we passed the site
of a fallen tree or a new building I would close my eyes and remember it the way it was
until we had moved on to the safety of the sacred permanent”. There are many similar
examples of such passive, protective deployment of a geographical imagination;
Grandin’s descriptions of her own internal “visual symbol world that allowed her to keep
going” is incredibly illuminating. She imagines doors, gates, passageways as mental
boundary markers that help her negotiate real barriers in the jungle of the real world
beyond the symbolic. There are, however, many different ASD responses, where change
is resisted far more forcefully. Fearing they’re losing their grip on the world, that it’s
shifting and so wresting control from them, some others initiate a form of counter action,
using some physical and / or psychical means to block the world out or stop it in its tracks
- placing hands over ears and screaming at full volume isn’t unusual. Another autistic
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writes that “nobody ever asked me why I stomped my feet, or screamed, or thrashed
around with my arms. […] I just wanted everyone to shut up. It was overwhelming –
horrible.” (Collins 102) In such a meltdown, self-injurious behavior can also be used to
apparently cut through all other sensation and restore a sense of the familiar, redrawing a
boundary on the body itself. Williams (2002: 215) explains that self-harm can also
involve “testing as to whether one is actually real. As no one person is experienced
directly, because all feeling gets held at some sort of mental checkpoint before being
given to self by self, it is easy to wonder whether one in fact exists.”
Those at the higher functioning end of the spectrum able to articulate such experience at
least in written form, in their own space and at their own time, are perhaps able to learn
the rules of appropriate behaviour and social and spatial tactics to help them cope with or
contest change, in ways less disruptive, or obvious to ‘the natives’. Prince-Hughes (2004:
127) describes finding small spaces “where no change would occur”, shutting herself in
this “small sanctuary” from the “sensory onslaught of the outside world” for literally
hours at a time. Such “containment [she explains] silently reminded me of my physical
boundaries – never solid and always in danger of disappearing.” With the outside world
thus shut out, she thought often about death, hoping that heaven would be a place where
nothing ever changed (Prince-Hughes 2004: 39).
Given ASD worlds are so perceptually chaotic, it is surely unsurprising that individuals
struggle to impose an order of sorts through resistance to environmental change, and
repetitive and ritualized behaviour. Therese Joliffe writes from personal experience:
“Reality to an autistic person is a confusing interacting mass of events, people, places,
sounds and sights. There seem to be no clear boundaries, order or meaning to anything. A
large part of my life is spent just trying to work out the pattern behind everything. Set
routines, times, particular routes and rituals all help to get order into an unbearable
chaotic life.” (76)
ASD narratives such as this are reminiscent of Obsessive Compulsive Disorder, recently
examined from a geographical perspective by Segrott and Doel (2004) in an analysis that
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demonstrates very powerfully that OCD sufferers constantly need to re-order space using
an imaginative variety of tactics intended to protect psycho-social as well as physical
boundaries. Order is obviously of crucial importance in the perceptual experience of ASD
individuals, perhaps considered especially precious because it’s such a rarity in the
‘natural’, chaotic course of their lives. Gerland (2003: 53) explains: “I used to write
labels for various things. I wanted everything to be orderly, clear and separate. This was
not some way of keeping inner chaos under control, but an attempt to arrange the external
world according to the same system as my inner world, a way of establishing a slightly
better accord between me and everything else.” Order has to be cultivated and nourished,
protected precisely because of its own perceived protective properties. In the words of
Prince-Hughes (2004: 25): “Autistic people will instinctively reach for order and
symmetry: they arrange the spoons on the table, they line up matchsticks or they rock
back and forth, cutting a deluge of stimulation into smaller bits with the repetition of their
bodies’ movements.”
Many accounts describe rocking movements as deeply calming, suggesting the body
itself can be used to soothe the effects of over stimulation through smooth, repetitive,
predictable behaviors – this extends to the way it is clothed. Prince-Hughes would
always, if possible, wear the same pair of favourite pants – she says, “I felt like I would
disappear if I were not hemmed in by the familiar and unchanging” (p. 20)8 - and goes
further in attempts to deploy clothing as protective armor against the world. Thus: “I
wore leather jackets because their weight and thickness calmed me; dark glasses,
sometimes even at night, because they cut out some of the stimulation to my nervous
system; and heavy boots that made me feel secure and grounded as I clomped around in
them [she says she might have looked tough but was …] withdrawn and armored
primarily out of anxiety and confusion.” (p. 79) Such performances of emboldened
boundaries present at least outward challenges to expectations around gendered norms, in
contrast to the ‘internal’ state of affairs: ASD women in social space are more likely to
feel introverted, insecure and otherwise more stereotypically feminine. I’ve been really
struck in sartorial accounts such as that of Prince-Hughes by similarities with phobic
coping mechanisms aimed at averting a perceived crisis in the integrity of weakened
psycho-corporeal boundaries. There’s a world of difference in many ways between such
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phobic anxiety disorders and affective disorders like ASDs, but perhaps the experiential
similarities in terms of social and spatial coping mechanisms are worthy of further,
geographical, investigation.
So far, I’ve tried to demonstrate that ASD experience might be conceptualized and
theorized spatially in a way that is sympathetic and respectful, as well as valuable. I’ve
suggested there may well be some experiential linkages between ASD women’s
‘geographies of exclusion’ and previous work on emotional disorders that should be
further explored, and would tentatively suggest that a study of the experience and
production of space by and for people with ASD might also provide insights into the
production of space in everyday, perhaps more typical and typically social life. However,
I now want to move on to consider in more depth the nature and implications of gendered
dynamics of diagnosis for ASD women, continuing to use their own words as far as
possible.
Diagnosis: Engendering Autism Awareness
In Peter Szatmari’s A Mind Apart, he recounts the events following his receipt of a letter
from Sharon, who articulates her reasons for writing in a way that is clear, insightful and
moving:
“Since I first heard of autism I have thought of it as ‘my problem,’ and this conviction
only deepens as I learn more, and as I fail to change myself despite my best efforts.
While professional diagnosis may be a comfort, professional denigration would be
painful, which is why I have avoided exposing myself to anyone qualified to deny my
self-diagnosis. The main reason for writing now is the hope of finding a support group of
fellow adult recoverees. I would really like to find some company.” (in Szatmari 2004:
59/60)
Szatmari describes his meetings with Sharon at some length, and also provides us with
some detail regarding the complex nature of diagnosis from a clinician’s perspective.
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Clearly, “there is no blood test or brain scan that will tell us who has ASD and who does
not”, and with an adult patient such as Sharon, there are particular ‘challenges’ relating to
the lack of corroborating evidence and the need to rely on the individual’s own account
of their developmental history. The difficulties may thus be significant, and although
Szatmari explains that “[w]hat she described to me was certainly analogous to the
experiences of people with ASD”, “in the end” he decides that he could not, in fact,
“give” her this diagnosis: “Sharon’s insights into her own predicament were just too good
and her accomplishments too impressive” (Szatmari 2004: 77). The extent to which he
claims to have learned about the nature of ASD from her experience is then puzzling,
given that she does not (is not allowed to) own the identification. Nonetheless, Szatmari
is clearly pleased to have gained such considerable insight from her contributions, and
puts a self-satisfied end to the story by saying goodbye to his ‘sub-clinical’ patient and
going to collect his mail, “in hopeful anticipation of other gifts that might come my way”
(p.78).
What Szatmari might give back, albeit unwittingly, is an increased awareness of the
strategic (political and methodological) importance of prioritizing women’s own accounts
and interpretations of their experiences over and above those that are clinically reductive
and / or dismissive. This strategy includes taking seriously those diagnostic categories
with which women choose to identify, the labels they elect to apply to themselves in
preference to those many others they have often been stuck with. As Prince-Hughes
(2002: xxii) points out “[m]any people with autism care little for the fine distinctions of
category, preferring to focus on the common underpinnings of the phenomenon.” I intend
to follow this lead and stay faithful to labels deemed significant by writers themselves.
We have already noted that misdiagnoses among ASD women are common-place, and
many of the alternative explanations and labels they collect are of a more stereotypically
‘appropriate’ and common feminine form. Michelle, for example, was cast as anorexic
because of her troubled and apparently strange – but in fact typically autistic relationship with food.9 She had managed to ‘pass’ as relatively normal in relation to her
own and others’ eating habits prior to leaving home to attend college. In this new and
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overwhelming environment, she was expected to eat with other students in the very
public cafeteria, a ‘nerve-wracking’ place that failed to facilitate the development of a
protective, comforting routine – few other students would request and indeed require the
exact same foods everyday. Michelle’s intolerance for disturbing colour and texture
combinations severely restricted her options, and so she ate very little, with the following
distressing results: “After a couple of weeks of telling me continuously that I wasn’t fat
(which struck me as odd, as I never thought I was) pressuring me to eat more, and
monitoring every bite I took, they finally ‘turned me in’ to the school counselor…. It was
a matter of shape up, or ship out” (in Prince-Hughes 2002: 46).
Michelle was in fact threatened with admission to a psychiatric ward, which, predictably,
sent her anxiety “through the roof. I took to rolling up into a little ball and rocking under
tables again, something I hadn’t done much since pre-school” (in Prince-Hughes 2002:
46). Though Michelle was eventually able to negotiate a compromise satisfactory to the
‘authorities’, the consequences for her own health were dire. Forcing herself to eat in
public, but literally unable to stomach available food combinations, she began
regurgitating her meals, and felt forced to do so for some time until she was able to create
a more mutually acceptable routine. The compromise required displaying two kinds of
food on a plate at the one time: Less than two was unacceptable to others, more than two
was unmanageable for her, but so long as “they were the kinds of items that said, ‘We
comprise a normal meal’ to everyone who looked” two items were satisfactory to all (in
Prince-Hughes 2002: 48).10 As with other ASD women, Michelle had a great many
unusual habits, but it was her disordered eating – more typical of women than men - that
attracted the greatest attention and attempts at intervention and control.
Other misdiagnoses – including forms of ‘severe and enduring’ mental ill-health - may be
somewhat less stereotypically feminine in nature than anorexia or the chronic depression
and anxiety so commonly encountered in diagnosis. However, the simple avoidance of
ASD as a potential diagnostic outcome is in itself potentially significant for our gendered
analysis. Misdiagnoses can be at least partially understood in terms of clinicians’
presuppositions about ‘male’ and ‘female’ problems: when disordered women come to
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the attention of medical professionals, ASD will not be the first – and may not even be
the last – of those labels that enter their minds. The results can be immensely disruptive
to the course of a woman’s life.
Patricia Clarke, for example, felt forced to adopt and adapt to the label ‘bipolar’, applied
to her in her thirties. She took the prescribed medication for 13 years, “terrified that I
would end up institutionalized for insanity, having no idea what was going on, or that my
behaviour was actually normal for a person in my circumstances” (in Miller 2003: 82).
Others undergo a series of more typical and less disturbing ‘diagnoses’ over many years
before such disturbing labels were finally applied. At school, Lawson was “considered
lazy, slow and immature for my age … I remember one teacher saying that I was
‘educationally subnormal’…. Other children called me ‘crazy’ or ‘mad’ and some didn’t
like to play with me.”11 Gerland (2003: 80) suffered similar misunderstandings as a
school child, and was described in the following terms: “Lazy. Doesn’t listen. Doesn’t
help. Careless. Inattentive. Drags her feet. Hears only what she wants to hear. Sulks.”
(She later adds “silly, willful, stubborn, rude, spoilt, and defiant” to the growing list.)
Negative behavioural judgements and pseudo-diagnoses based particularly around
perceived mental deficiencies are perhaps the most commonly applied to ASD children:
“I was a nut, a retard, a spastic. I threw ‘mentals’ and couldn’t act normal” (Williams
2002: 11).12
Many of the common perceptions become increasingly harsh with the growth of the girl
towards womanhood: “the older I grew the more was demanded of me, while at the same
time I had increasingly less access to any childish charm that might have compensated for
my failings. A withdrawn chubby four year old could be met with a little more
indulgence from the world around her than a suspicious and overweight ten year old”
(Gerland 2003: 122). The labeling process often becomes increasingly explicitly
feminized: “To some people my attitude either came off as being a bitch or mad”
(Cowhey 2005: 21); “I was also thought of as being a witch” (Cowhey 2005:127).13
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Following Lawson’s troubling girlhood, she left school and experienced increasing
difficulty in the ‘outside’ world. She ‘crashed’ and entered an institution. Although
Lawson doesn’t remember the events leading up to her admission at all clearly, “[t]he
doctors saw my agitation and constant mobility as undesirable and prescribed Largactil to
calm me down. [After a few months…] my very lifeblood felt sucked dry and I had no
desire to relate to anyone or anything” (Lawson 2005: 67). She attempted suicide at age
20 and entered the institution for a second time, considered to be having ‘another
schizophrenic episode’. She describes the place as deeply depressing, feels lucky to
avoided ECT and resolved never to return to the hospital again, deciding that “[i]f they
think I am mad, then I must prove them wrong” (Lawson 2005: 77).14
For Lawson, it was 25 years before the diagnosis of schizophrenia was overturned. “I was
diagnosed with Asperger’s syndrome after spending time with a psychologist at a wellknown Melbourne University in August 1994. It was a relief to be told I was not
schizophrenic – but also scary to realize I had some other ailment that had no cure”
(Lawson 2005: 77). She then worked hard to educate herself about her new disorder: “My
hunger for information and understanding pursued me like a lost dog. The more I read
about depression and schizophrenia, the more I was convinced these conditions did not
belong to me” (p. 92). Williams too describes searching for insight in the medical section
of her local library: “I buried my head in books on schizophrenia and searched
desperately to find a sense of belonging within those pages that would give me a word to
put to all of this. / Suddenly it jumped out at me from the page… ‘Autism’, it read, ‘not to
be confused with schizophrenia’.”15 Following further research, “I felt both angered and
found. The echoed speech, the inability to be touched, the walking on tiptoe, the
painfulness of sounds, the spinning and jumping, the rocking and repetition mocked my
whole life.” She was twenty six years old, and had no satisfactory sense of self
understanding, having felt forced to accept the probable accuracy of others’ words for
such a significant part of her life: “Until I had actually met someone who was like me, I
hadn’t realized that my ‘quirks’ and ‘difficulties’ were anything other than my mad, bad,
or sad personality” (Williams 1995: 80). Although she is reassured by the discovery of
autism, it is not a label welcomed by all those who knew her, and her problems have been
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altered rather than resolved.16 For many others, the perceived accuracy of the new label at
least provides some comfort and potential access to a community of others: “At the time
that we as autistic people finally get a diagnosis – especially if that diagnosis occurs in
adulthood – we are relieved just to know there are others like us out there.”
Prince-Hughes is among those for whom obtaining a diagnosis served as an enormous
relief, helping her to finally make some sense of her unusual life. At the age of thirty six,
she felt able, at long last, to take some control over her circumstances, and such relatively
simple steps as changing her diet and taking medication to help with compulsive
symptoms, improved her quality of life almost immediately.17 Despite the sense that such
changes could have been made much earlier had an appropriate diagnosis been
forthcoming, she and other ASD women are largely sympathetic to the challenges
clinicians face when presented with their complex and changing, oddly contextdependent symptoms. Often, these are further complicated when presented through the
prism of wildly differing quirks, characteristics, and ‘eccentric’ personalities. Miller
(2003: xix), for example, recognizes that: “the diagnostic difficulty is rooted in the
diversity of autism itself, which is neither unitary, nor binary, but plural [and is further
complicated by the] likelihood of comorbidity. Many autism spectrum people have one or
more other conditions, such as Attention Deficit Disorder (ADD), chronic or recurrent
mood disorders, Tourette’s Syndrome traits, learning disabilities, Prosopagnosia
[inability to read faces] and others.” Accordingly, whichever symptom the person
presents most prominently, whether intentionally or not, tends to become the primary
diagnosis.
Further barriers to diagnosis face those who are high functioning - for example,
maintaining jobs and relationships “or otherwise not needing, or at least not getting social
or medical intervention”. The DSM-IV checklist “imposes the criterion of significant
impairment in critical areas of the person’s life. A number of people have been refused
diagnosis on this basis” (as with Szatmari’s patient Sharon, who simply ‘had too much
insight’ to be on the autism spectrum). The extent of the effort that ASD women have
made to survive despite their profound difficulties can then serve to significantly
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undermine their efforts to obtain an accurate diagnosis. As Angie explains - not
unsympathetically - “I know it is hard to diagnose in adulthood because we can learn to
compensate and cover” (in Prince-Hughes 2002: 77). Similarly, Miller (2003: xxii) states:
“[m]ost high-functioning autistic people, not knowing what is ‘wrong’ with them,
develop a lifetime pattern of using their intelligence to find ways to appear normal. …
Like others who seek to be what they are not, we invariably end up with painful
memories at best and self-loathing at worst.” Aside from the harmful implications for
ASD women themselves, failure among clinicians to recognize the significance of
women’s attempts at passing strange to be ‘normal’ means they continue to operate with
and perpetuate an inaccurate picture of autism across its spectrum of affects. This is a
picture from which women remain conspicuously absent, and efficacy of ASD theories
and treatments suffer significantly as a result.18
Final Section and Conclusions….
There are a number of interconnected aspects that need to be further developed / teased
apart:
1. Clinicians are less aware of the existence of ASDs in women and thus less likely to
‘see’ and then diagnose it.
2. ASDs may be manifested and experienced differently by girls and women, as
evidenced by the following quotes:
“In recent years, the growing number of women seeking diagnosis has called into
question not only the condition’s prevalence in the female population, but its commonly
accepted parameters as well. Professionals are beginning to speculate that AS often
manifests differently in women… [girls may] have the same passion for facts but less
drive to exhibit that knowledge. Clinicians who default to this boyish profile engendered
by their own diagnostic narrowness may have a blind spot that keeps them from seeing
the whole autistic spectrum. At the same time, little professorial girls may be seen as a
social anomaly (not acting like girls), and their perceived socio-sexual deviance may
obscure their neurological difference” (Miller 2003: xxi).
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“AS is often diagnosed in response to a series of events originating in a school
teacher’s observation of aberrant behavior. A child who is aggressive, noisy, exhibiting
lack of motor inhibition (wild, acting out) is attended to, and this behavior is
characteristic of boys. A child who is well behaved, quiet, and apparently compliant will
often be overlooked, sometimes despite underachievement. Such a child is quite likely to
be a girl” (Miller 2003: xxi).
3. Some of the acceptable roles open to women provide a cover for ASD traits,
contributing further to their diagnostic marginalization. Entering into a partnership
with a man can be a ‘survival decision’, giving the appearance of normality, as well as
support, someone to copy and help navigate the world. (ASD women can and many do
‘choose’ to lead very private lives, based around home and family. Fulfilling a socially
acceptable and even valued social role serves to deflect unwanted attention)
4. BUT, women are also expected to have social skills and display empathy in a way
that men are not, meaning that ASD women may be labeled as ‘cold’, standoffish,
snobbish, unfriendly, a ‘bitch’ and so on. Women lacking social skills may be criticized
and devalued more than similarly incompetent men.
5. ASD women can and do experience and perform different versions of gender, and
contest expectations of others in socially significant ways.
“having autism underpinned much of my gender identity or rather lack thereof. I
have since learned that most autistic people do not see gender as an internal or external
category that is important or even applicable, especially to themselves”. (Prince-Hughes
2004: 59)
“I never learned to see my body as a woman’s body in the sense that a woman’s
body is an actor in socio-sexual relations. My body is the support structure for me, my
intellect, my memories, my sensory experiences. If it has a gender, that gender lives on
the outside, not in here where it would make a difference to how I feel or see the world
(except in so far as I am shaped by how my gender causes the world to see and feel about
me).” (Meyerding, in Miller 2003: 165/6)
“I was an androgynous kid and most clearly perceive the world in a non-gendered
way” (Jean, 38)
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Conclusions need to think seriously about the multiple implications of gender for the
experience of ASD women, in terms of approaches to diagnosis and development of
coping mechanisms / educational interventions sensitive and appropriate to ‘other’
gendered experience.
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The title is taken from a biographical note in Donna William’s (2004) Everyday Heaven: Beyond the
Stereotypes of Autism: “She grew up with more labels than a jam jar and like many people with autism born
in the 60s and earlier, she was not formally diagnosed with autism until adulthood.”
2
The paper that follows is very much a draft version in its early stages; the argument is in many places
underdeveloped and incomplete, and the majority of the footnotes contain ‘extras’ and personal reminders.
1
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I’m hesitant about using a term that attributes agency and active involvement to the women who
contribute to this research – I’ve never spoken to them, they have signed no consent form. However, I think
ethical appropriation of their (albeit published and publicly available) words demands some recognition of
the extent to which their experience and ideas have shaped my own. They have thus participated
significantly in the production of this paper.
4
This, in fact, was the case even with her own family, about whom she explains: “We scarcely came from
the same planet” (Gerland 2003: 13).
5
There are many other similarly persuasive accounts. For example: “I could write essays all day – they do
not bite back at me. The written word has a form all its own. The pen between my fingers feels solid and
tangible. It moves with me and allows the symbols of my pain or ecstasy to reveal themselves. Words
express my distress through the pen and onto the paper and back into my mind. I can see them on the paper;
they talk to me and help me make sense of my life.” (Lawson 2005: 97) “I find the written word much
easier to comprehend than the spoken word. It takes me a lot longer to process conversation and work out
the meaning behind the words than it does to scan the words on a written page.” (Lawson 2005: 9)
6
I am no sense an insider in relation to ASD experience - my own sense of ‘alienation’ in a masculinist,
marginalizing / medicalizing environment is on another plane entirely.
7
Though as we might expect, ASD women have used the same phrase in relation to themselves. For
example: “To my family, I was always different because I lived in a world of my own.” (Lawson 2005: 12)
8
“I also liked being in small cramped spaces where it was quiet and calm, especially when I fitted exactly
into the space. I wanted to put on a space, put on a sort of cave, like a garment.” (Gerland 24)
9
Susan, for example, “made the same thing for dinner for two years (club sandwiches with French fries and
a pickle pear)”, eaten while listening to the same music. Gunilla Gerland (104) was frequently told that
“‘food doesn’t bite you’, they said, laughing. But what did they now about it?” Describing fairly typical
difficulties with food, she describes how she blends foods together to cope with different textures, causing
a friend to say “you’re not pregnant or something are you?” My mind wondered what the ‘or something’
meant.” Lawson 9
10
The requirement to keep up appearances still exists for her, and she continues to make “attempts at
normalcy – I keep a wide enough variety of foods stocked in my kitchen so that it looks normal [but..] there
are probably less than 20 foods I eat at home on a regular basis. And even now, I tend to revert to my ‘one
food only’ routine when I’m especially stressed or anxious.” 48
11
“For so many years, my disability was never acknowledged in my family. It was just a case of an
unappreciative daughter / sister who liked to ‘do her own thing’. Once, during a conversation, my mother
said to me, ‘you were never normal, you probably got it from your father’s side.’ / Got what, I wondered?”
13
12
“Sometime during the third grade, the realization that I was different began to grow. .. why were things
that seemed so easy for other people so difficult for me? Was I perhaps backward? … Why wasn’t I a real
person? / I sank into a sense of pointless ness, began comfort eating and grew fat. Now at least I had an
externally tangible feature to be teased about.” 116
13
Cowhey states that “My life would not have been so confusing if I was diagnosed at a younger age.
[However] I do believe forty-six years ago [that] probably would not have been much help, because that
many years ago they would probably have put me in a nut house!” 160 “A crazy person is a good example
of how most describe me [“Her elevator doesn’t reach the top floor!” 105] …. Autism has given me an odd
and weird personality, but I’m not crazy, I’m different…being accepted in the normal world is hard and
frustrating for me.” 67
14
ASD behaviour can look like “inattention, apathy, boredom, or worse: drug abuse, a rebellious nature, or
perhaps a dangerous mental illness” xvii
15
Similarly, Gerland systematically went through books on psychology, medicine and psychiatry, trying to
find out what might be wrong with her. When she picks up a book about autism by chance, “suddenly I had
turned the right page in the right book. I recognized myself.” 234 “There was far too much of me described
for it to be sheer chance.” “Now I was hunting for someone who might help me understand... and at last I
had come to a place where I was taken seriously and where they knew a lot about my kind of difficulties.
16
“In the part-time job I had at my father’s workplace, I had been called a ‘smart kind of crazy-backward’.
I explained to one of the people there about autism… I had made my father ashamed by their knowing I
was autistic. / I don’t get it. Why would he be happier that people thought of me as crazy or backward but
3
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ashamed that they knew I was autistic (which means that I am not very crazy at all, intelligent in many
ways, and not necessarily mentally retarded)”
17
She was determined her partner should know that she doesn’t intend to live as a diagnostic description.
Rather, she intends to put her research into autism to constructive use. Prince-Hughes keeps a journal to
record and help her understand patterns in her behaviour and allows herself to use some of the more
innocuous comfort rituals. In addition, she joins an online discussion group for adults on the autism
spectrum who have been to university, all of which are experienced beneficially, and given her a sense of
partial control over her life and disorder. (176)
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As Miller contemplates: “I wonder how completely professionals can understand AS [used here to refer
to both “Autism Spectrum and Aspergers Syndrome] without the bigger picture of those who live with AS
everyday but have not seen fit to show up at their doors.” There is thus recognition among the women who
record their experiences that there are aspects of autism that never reach clinicians’ radar: “AS is a
neurological difference that often turns clinical in a culture that doesn’t value AS strengths. Much of our
survival requires us … to become better functioning according to the cultural hegemony of NTs, the neurotypicals, who call the shots about what is valued in people.” Xix
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