“More labels than a jam jar…” The Gendered Dynamics of Diagnosis for Girls and Women with Autism1
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 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 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 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 auto-ethnographies.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, 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….
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 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.
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.
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” (Prince-Hughes 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’ (non-autists) 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 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 well-intentioned 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. Prince-Hughes, 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 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 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 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.