Autistic Autobiography – Introducing the Field
SCE 28th-30th Oct 05
Autistic Autobiography – Introducing the Field
In my abstract I proposed that I would look at autistic autobiography with a view to answering three basic yet fundamental questions: Who has written these texts? Why have they written these texts? What have they chosen to write about? However, it turns out that the simplest questions can sometimes be the hardest to answer. In essence the answers to these questions are straightforward and unproblematic: Who has written these texts? Autists. Why have they written these texts? Because they have been diagnosed as autistic and this diagnosis has altered their perspective on life as well as their material and psychological circumstances. What have they chosen to write about? Life from an autistic perspective, life before and after diagnosis and what constitutes autistic experience.
However, upon closer inspection these questions and their answers perpetuate further avenues of enquiry, such as, what are the diagnostic criteria for autism? Given the impact of diagnosis on individual lives, how does this diagnostic criteria gain its authority? What impact does diagnosis have on the everyday life of autists? What type of autistic experience does each text describe? Do autistic autobiographies share commonalities of themes or descriptive and writing styles? Do commonalities arise within the texts themselves or are they part of the reader’s criteria? In what ways do shared themes differ from ‘traditional’ autobiographical texts? What does this tell us about autistic autobiography and the composition of ‘traditional’ autobiography?
To begin to answer these and many more questions, this paper shall look at three aspects of autistic autobiographical production and consumption. It will outline the history of autistic autobiography, it will demarcate this projects’ definition of autistic autobiography - what texts are being included and excluded and why, it will examine the relationship between the individual experience and the collective experience in autobiography and it will look at how genre can be used in studying this field.
Autistic Autobiography – A short history
The first autistic autobiography published was David Eastham’s Understand: Fifty Memowriter Poems, published in 1985. To date, and to my criteria, there are now 54 autobiographies in publication (see appendix 1). Working within a traditional generic notion of autobiography this figure represents texts that either are or predominantly are, “a full and flowing life story, initiated and shaped by the author, and fully attributed to or owned by that person” (Atkinson and Walmsley 1999). Therefore I have narrowed the field of autistic autobiography or autobiographical accounts from a possible 80 to 54 by not including works that I have judged to not meet this remit. Therefore notable exclusions to this corpus are Stephen Wiltshire’s Drawings (1985), Cities (1987), Floating Cities (1991) and Stephen Wiltshire's American Dream (1993), Peter Myers’ The Exact Mind: An Artist with Asperger Syndrome (2003) - with Simon Baron-Cohen and Sally Wheelwright and Ryan Wilson’s The Legendary Blobshocker (1999). Edited collections of personal narratives such as Aquamarine Blue 5: Personal Stories of College Students with Autism (2002) edited by Dawn Prince-Hughes or Women From Another Planet?: Our Lives in the Universe of Autism (2003) edited by Jean Kearns Miller are also excluded, as are theoretical or instructional texts written by those who have previously written autobiographies. The exception to the ‘no instructional texts’ rule is Luke Jackson’s Freaks, Geeks and Asperger Syndrome: A User Guide to Adolescence (2002). Although ostensibly an instructional text the narrative is heavily imbued by his family life, recollections and tales. Also as it is in the minority of texts written by adolescents (he wrote it aged 13) it merits inclusion. Finally, the corpus I present here does not include the myriad of life writing available in other media, be it the internet, art, music, animation or oral testimony. It is my intention to look at these different forms of self representation at future junctures.
The Function of Autobiography
Autobiography in itself is a written form of social communication that requires abilities of self awareness, projection, imagination, organisation, reconstruction and the ability, not only to recognise, but to wish to communicate and interact with others. Contradicting autistic traits at every turn the functions required for the production of autobiography mean the mere existence of autistic autobiography radically destabilises the simple yet wide ranging DSM-IV diagnostic criteria for autistic conditions (A.P.A.,1994). Indeed, their existence and the content of the lives they recount, vividly flesh out the tautological epistemology of the discursive structures used to pathologise difference while actually working to situate, negotiate and reinforce the boundaries of discursive normality in all its forms. Thus as the DSM-IV determines autism be diagnosed where there is a triad of impairments of social interaction, communication and functional behaviour, the increasingly wide ranging and diverse personal accounts of the condition resist the constrictive de-humanising medicalisation of this symptomatic diagnostic criteria.(Atkinson and Walmsley 1999; Molloy and Vasil 2002; Waltz 2005).
So what is at stake in the writing of autist autobiography? As Michael Bérubé suggests when discussing slave narratives, each autistic autobiography is a performative utterance, announcing its author’s very capacity for – and accomplishment of – the fact of self authorship on which can be based further claims for human rights. Each autobiographical text refutes the widely held presumptions that autists cannot reason, cannot write and cannot narrate their life stories without neurotypical mediation (Bérubé 2000).
Also, rewording G. Thomas Couser slightly, autobiography lets impairment be represented as a fact, as a ‘living condition’, not as a trope or metaphor. Indeed, it is through autobiography that the impairment and its subsequent disability, may be seen not only as culturally constructed but as constructive of a distinctive culture (Couser 2000).
So, again to reword Couser slightly, it is imperative to ask to what extent, and through what processes, can disability autobiography pose a significant challenge to the “empire of the normal” in what Lennard J.Davis has called “the United States of Ability”? (Couser 2000, 306)
The Individual and the Collective in Autobiography
Autobiography has both an individual and a collective function which co-exist in a dialectical relationship between individual experience of the personal markers of a singular life, and communal experience as a collective record of such personal experiences that cohere around the adoption or designation of a common, agreed term of identification.
The issues to be resolved in this dialectic are most visible in terms of the content of autistic autobiographies as, being individual representations of disparate collective experiences, accounts can display quite radical diversity. Primarily of course this is because one nexus of identity is being used to demarcate similarity where very little may, in fact, be present.
Also, being that an individual has, even within one genre, a selection of literary styles to draw upon to recount their experience, it is not a given that texts sharing a common subject matter or identification will resemble one another on all, some or any of these stylistic preferences.
The dialectic between the individual and the collective, content and function, is writ large in the politics of autistic representation and self advocacy. The two distinct ideological positions at either side of this debate are aptly demonstrated by a comparison between the Autism Society of America’s ‘Getting the Word Out’ campaign and the autistic self advocacy response ‘Getting the Truth Out’. (www.gettingthewordout.org and www.gettingthetruth.out). It is interesting to note here that the author of ‘Getting the Truth Out’ has, like those that write minority autobiographies, adopted the dominant mode of expression but has radicalised the medium by changing the content to highlight the ideological assumptions implicit within the dominant form.
The problems and suitability of taking on the dominant mode of representation have been outlined by G. Thomas Couser who suggests that the ‘tyranny of the comic’ and ‘triumph narrative’ and the demands of entry to, and imperatives of, the marketplace disadvantage differently abled authors. These difficulties, not without standing, nonetheless, he concludes that the unsurpassed opportunity for self representation that autobiography offers still makes the endeavour of worthwhile (Couser 2000). Indeed it can be seen that the continued publication of self-authored narratives of ‘exceptionalised’ autist experience can help put the ordinary back into what dominant neurotypical ideology deems ‘extra-ordinary’.
In the study of this corpus one has to be careful when approaching a text whose author’s primary (at least textual) identity is constituted diagnostically – by this I mean it is autistic autobiography in the specific, not neurodiverse autobiography in the general. It is imperative that one guard against reading the text symptomatically, by this I mean to read the text for idiosyncrasies of form that reflect autistic traits. To approach the texts in such a manner would be to repeat the denigration of individuals who have historically been ‘read’ for symptoms rather than a personality (Molloy and Vasil 2002; Waltz 2005).
That said however, each individual autistic autobiography is, regardless of the author’s intent, politicised by the mere fact of its existence. As the author of ‘Getting the Truth Out’ so aptly puts it, ‘My appearance and my life are political in nature whether I like it or not’ (www.gettingthetruthout.org). That individuals and minority resistance groups chose to use dominant forms of communication (and it is debatable to what extent this could be construed as choice) does not mean that readers have to adopt the dominant mode of medicalised interpretation when reading a text or for that matter when meeting an autist.
Hitherto the dominant approach to autistic autobiography has been through just such medicalisation, which has led to autistic authors being viewed as ‘miraculous’ anomalies. The subheading of Donna Williams’ Nobody Nowhere:The Extraordinary Autobiography of an Autistic (1992) and the American renaming of Tito Rajarshi Mukhopadhyay’s Beyond the Silence: My Life, the World and Autism (2000) as The Mind Tree: An Extraordinary Child Breaks the Silence of Autism (2003) are testimony to this.
The assignation of autistic autobiographies as ‘anomalous’ coupled with the individuation of variants of autism (where people are perceived to develop their own personal mix of autistic traits and symptoms from under the broad diagnostic criteria) have centred both autism itself and the ‘failure to break free of its bonds’ as the responsibility of the impaired individual (see also Couser 2000). As the author of ‘Getting the Truth Out’ notes, “they talk about and treat us as a group and yet insist that we should only talk about ourselves as isolated individuals” (www.gettingthetruthout.org). Isolating autistic expression in this way has developed a disabling discourse where autists’ opinions presented in their self representations get diluted in the language of impairment and individualism.
However, as the corpus of autist autobiographies grows, coupled with the notable self advocacy presence on the internet, the plausibility of the label of ‘anomaly’ weakens and with it, the situating of the disabling of the neurologically different as their own fault due to their inability to ‘fit in’.
The collection of texts that comprise the genre of autist autobiography is now such that it enacts a community response to the individuation of impairment, even if that response is not the intent of individual authors themselves. As the knowledge of the disparate yet cohesive experiences contained within the corpus spreads, the genre becomes more robust, capable of fending off the dismissive descriptions of ‘exemplary-individual-texts- that-are-exceptions-to-the-rule’ insisting instead that ‘autiebiographies’ are, rather, indicative of the complex subjectivity within every autist, oral or not.
The Individual and Collective in Autistic Autobiography
Dorothy Atkinson proposes that self reflexivity is the key requirement for autobiography to move from the individual to the communal. In recognising and acknowledging a wider community, a collectivity of personal narratives creates an intertextual alliance that guards against what David T. Mitchell has termed the ‘body solitaire of disabled autobiography’, the reified singular success story typical of disabled representations (Mitchell 2000).
In terms of self reflexivity, what marks out autistic autobiography is the significant presence not only of inter-textual acknowledgements by authors, but of accounts of self diagnosis through reading autobiographical accounts. In this way, far from being the ‘co-ordinates of a singular subjectivity’ autistic autobiographies are what Couser has termed ‘first person plural accounts’ with texts performing autoethnographic functions of both ‘foregrounding the roots of identity in disability’ and ‘resisting or undermining objectification by some presumptive medical or medicalizing authority’ (Couser 2000; Mitchell 2000). In the accounts of a self-diagnostic readership, autist autobiography not only surpasses the self reflexive criteria of community autobiography but empowers individuals as authoritative experts through self recognition. In this sense then it may not only make sense to talk of ‘autiebiography’ but also of ‘autie-ethnography’ as it is in the identification with ‘autism’ that the autoethnographic possibilities of autistic autobiography are played out.
Originally I conceived that this project would categorise autist autobiographies in the same way that John Burnett et. al. classified the autobiographical texts they recovered in The Autobiography of the Working Class (1984); namely, ancestry and childhood, education, family relationships, work, religion, politics and leisure (friendships and social activities) (Burnett, Vincent et al. 1984).
However as Dorothy Atkinson learned in trying to reverse the power of the perfomative functions of medicalised subjects in her work with people with learning difficulties, keeping the narratives focused on typical experiences, using universal themes such as childhood, home life, schooldays, families and neighbourhoods’ only worked up to a point (Atkinson and Walmsley 1999).What quickly became apparent though was that the approach failed precisely in its denial of difference. This too becomes apparent when looking to thematically categorise autist autobiography. Whereas many autists recount having enjoyed some of life’s more typical experiences, to a greater or lesser degree, most of the texts are taken up with trying to explain the subjective differences of their life experiences as autists. As with Atkinson’s group, it transpires that autists’ individual and collective memories are very different from the experiences of most people of their age and class (at least subjectively). Likewise, if an analysis of generic traits and themes were to focus upon the ordinary and mundane experiences of everyday life as portrayed in autist autobiography, they too would turn out to be far from ‘ordinary’, that is, to a neurotypical reader. For cognitively different readers the common accounts of institutionalization, misdiagnosis, mistreatment, having to work ten times as hard as everyone else and never feeling able to keep up, or feelings of frustration, confusion, loneliness and depression, would unfortunately seem all too familiar. The stoicism, dogged determination or resentment expressed in these narratives would be familiar too.
Genre as Process
As Richardson and Spolsky assert, in seeking generic classifications with which to classify texts, what genre studies has inadvertently shown is that texts that would be considered exceptions to the rule, prove to be more interesting and appealing than those that adhere to generic structures. (Richardson and Spolsky 2004). They conclude that ‘genre is not a thing but a process and specifically a process of communication’ and ‘genre categorization is no less than a way of organizing a competent reader’s ability to pattern inferences about a text and its relations to other discourse’ (Richardson and Spolsky 2004). Recognising genre as the reader’s ability and role in patterning inferences to other discourses is an important way of assuaging worries of ‘the imposition of standard scripts on a disempowered group’ (Couser 2000). This conception of genre accredits readers with the ability to read for the differences when faced with an atypical, politicized narrative within a well established genre of the literary market place. Therefore, when reading ‘success’ stories of autists one may be led to read between the lines for the personal cost extracted for that success.
However, this positivist approach to reader responsibilities in genre finds its antithesis in Richdarson and Spolsky’s further assertion that ‘those aspects of a text that seem most relevant to a receiving audience can almost always be shown to mirror the concerns of that audience’s moment’ hence the proliferation and repetition of computer analogies used by autist authors in other forms of popular discourse (Richardson and Spolsky 2004). Furthermore, following Victoria Mason Vaughan, they go on to assert that genre is also ‘process whereby texts mark and make cultural meanings’. However, what has to be remembered and assessed here, is that this process takes place within a system of uneven distribution of cultural, social, political and economic power. Whereas a genre such as autistic autobiography may contain several examples of different types of deviations from the generic norm, those that are likely to be popularised are those that correlate to a pre-existing method of understanding. So, where as autistic autobiography may have numerous examples of differing subjectivities, one or two may become reified as indicative of the whole corpus. The works of Temple Grandin and Donna Williams may be just such an example of this.
That said, the concept of genre as communication, as a way of describing a process of mediation between things, is still useful when looking at autistic autobiographies and determining what generic traits or thematic features to privilege.
So, considering genre as a communication process that enables the patterning of inferences and relations to, and thereby potential restructuring of, discourses, I would suggest the following distinctions for the structuring of generic categories of autistic autobiography:
1. Male 2. Female 3. Adult with diagnosis from childhood 4. Adult with diagnosis in adulthood 5. Self diagnosis 6. Adolescent 13-18 with diagnosis from childhood 7. Child under 12 8. Mute 9. Facilitated Communication 10. Poetry 11. Drawings 12. Scientific References 13. References to other autist authors 14. References to an autist community
Categories 1 and 2, as can be seen from the appendix, are incongruous to medical claims that autism affects up to 10 times more males than females. Categories 3, 4 and 5 will indicate the amount of self diagnosis in adulthood and will demonstrate that as an ‘invisible’ impairment many people have been able to live with autism without recognition. Examination of the differing life narratives between 3 and 4 should reveal interesting differences. The existence of categories 6 & 7 are interesting in themselves and speak to notions of childhood, selfhood and responsibility. Categories 8 & 9 relate to the unheard or rather un-listened to in society and to issues of discursive silencing and representation. Categories 10 & 11 speak to the suitability of certain media and modes of communication for the differently abled and for the communication of different types of subjectivity. Categories 12 & 13 relate to the validation and establishment of authoritative discourses of knowledge. Categories 13 & 14 relate to the establishment of a geographically disparate yet cohesive and self aware autistic community.
No matter what the most expedient generic categorisations of autistic autobiographies turn out to be, as with all minority group writings, is that the existence of, and access to, autobiographical works that can transform the way in which the group identify and regard themselves and in turn how they are regarded by those with greatest opportunity to represent the group (Burnett, Vincent et al. 1984).
American Psychiatric Association (1994) Diagnostic and Statistical Manual of Mental Disorders 4th edn. (Washington, DC, American Psychiatric Association). Atkinson, -. D. and J. Walmsley (1999). "Using Autobiographical Approaches with People with Learning Difficulties." Disability and Society 14(2): 203-216. Bérubé, M. (2000). "Autobiography as Performative Utterance." American Quarterly 52(2): 339-343. Burnett, J., D. Vincent, et al., Eds. (1984). The Autobiography of the Working Class: An Annotated and Critical Bibliography. Whitstable, Harvester Press. Cassuto, L. (2000). "Oliver Sacks: The P.T.Barnum of the Postmodern World?" American Quarterly 52(2): 326-333. Couser, G. T. (2000). "The Empire of the "Normal": A Forum on Disability and Self-Representation: Introduction." American Quarterly 52(2): 305-310. Mitchell, D. T. (2000). "Body Solitaire: The Singular Subject of Disability Autobiography." American Quarterly 52(2): 311. Molloy, H. and L. Vasil (2002). "The Social Construction of Asperger Syndrome: the pathologising of difference?" Disability and Society 17(6): 659-669. Richardson, A. and E. Spolsky, Eds. (2004). The Work of Fiction: Cognition, Culture and Complexity. Williston, VT, Ashgate. Waltz, M. (2003). Metaphors of Autism, and Autism as Metaphor: An Exploration of Representation. Making Sense Of: Health, Illness and Disease. ebook, www.inter-disciplinary.net/mso/hid/hid2/hid03s11a.htm. Waltz, M. (2005). "Reading case studies of people with autistic spectrum disorders: a cultural studies approach to issues of disability representation." Disability and Society 20(4): 421-435.
Irene Rose Autistic Autobiography - Introducing the Field Authors by Year of Publication and Gender
NAME G DATE NAME G DATE Eastham, David M 1985 Mukhopadhyay, Tito R. M 2000 Grandin, Temple F 1986 O'Reilly, Michael J. M 2000 Miedzianik, David M 1986 Fan, Jennifer F 2001 Eastham, David M 1990 Grigsby, Lincoln M 2001 Barron, Sean M 1992 Hall, Kenneth M 2001 McKean, Thomas M 1992 Meldrum,Desmond M 2001 Williams, Donna F 1992 Shore, Stephen M 2001 Williams, Donna F 1993 Jackson, Luke M 2002 McKean, Thomas M 1994 Jackson, Nita F 2002 Meldrum,Desmond M 1994 Page, Thomas S. M 2002 Grandin, Temple F 1995 Rajapatirana, Chammi M 2002 Rocha, Adriana F 1995 Romkema, Craig M 2002 Sellin, Birger M 1995 Sanders, Robert S. Jr. M 2002 Sellin, Birger M 1995 Slater-Walker, C & G M/F 2002 Williams, Donna F 1995 Birch, Jen F 2003 Gerland, Gunilla F 1996 Fleischer, Marc M 2003 McKean, Thomas M 1996 Hundal, Ppinder F 2003 Williams, Donna F 1996 Mann, Nicky F 2003 Hale, Alison F 1998 Narayanan, Krishna M 2003 Lawson, Wendy F 1998 Peers, Jessica F 2003 Lee O'Neill, Jasmine F 1998 Schneider, Edgar M 2003 Blackman, Lucy F 1999 Schull, Rich M 2003 Hale, Charles Martel Jr. M 1999 Soledad, Starfire M.L. F 2003 Meldrum,Desmond M 1999 Hadcroft, Will M 2004 Schneider, Edgar M 1999 Prince-Hughes, Dawn F 2004 Holliday Willey, Liane F 1999 Williams, Donna F 2004 Brine, John M 2000 Hammerschmidt, Erika F 2005
*American 2003 release titled The Mind Tree: An Extraordinary Child Breaks the Silence of Autism **A Journey with Autism using Facilitated Communication Techniques
54 in total 30 Male 23 Female 1 Joint Authored Irene Rose Autistic Autobiography - Introducing the Field Authors by Year of Publication and Year Totals
NAME DATE TOTAL For Year NAME DATE TOTAL For Year Eastham 1985 1 Mukhopadhyay 2000 Grandin 1986 O'Reilly 2000 3 Miedzianik 1986 2 Fan 2001 Eastham 1990 1 Grigsby 2001 Barron 1992 Hall 2001 McKean 1992 Meldrum 2001 Williams 1992 3 Shore 2001 5 Williams 1993 1 Jackson 2002 McKean 1994 Jackson 2002 Meldrum 1994 2 Page 2002 Grandin 1995 Rajapatirana 2002 Rocha 1995 Romkema 2002 Sellin 1995 Sanders 2002 Sellin 1995 Slater-Walker 2002 7 Williams 1995 5 Birch 2003 Gerland 1996 Fleischer 2003 McKean 1996 Hundal 2003 Williams 1996 3 Mann 2003 Hale 1998 Narayanan 2003 Lawson 1998 Peers 2003 O'Neill 1998 3 Schneider 2003 Blackman 1999 Schull 2003 Hale 1999 Soledad 2003 9 Holliday Willey 1999 Hadcroft 2004 Meldrum 1999 Prince-Hughes 2004 Schneider 1999 5 Williams 2004 3 Brine 2000 Hammerschmidt 2005 1
54 in Total 30 Male 23 Female 1 Joint Authored
Irene Rose Autistic Autobiography - Introducing the Field Total Publications by Author by First Publication Date
NAME DATE TOTAL For Author NAME DATE TOTAL For Author Eastham 1985 Schneider 1999 1990 2 2003 2 Grandin 1986 Brine 2000 1 1995 2 Mukhopadhyay 2000 1 Miedzianik 1986 1 O'Reilly 2000 1 Barron 1992 1 Fan 2001 1 McKean 1992 Grigsby 2001 1 1996 Hall 2001 1 1994 3 Shore 2001 1 Williams 1992 Jackson, L 2002 1 1993 Jackson, N 2002 1 1995 Page 2002 1 1996 Rajapatirana 2002 1 2004 5 Romkema 2002 1 Meldrum 1994 Sanders 2002 1 1999 Slater-Walker, C & G 2002 1 2001 3 Birch 2003 1 Rocha 1995 1 Fleischer 2003 1 Sellin* 1995 Hundal 2003 1 1995 2 Mann 2003 1 Gerland 1996 1 Narayanan 2003 1 Hale, A 1998 1 Peers 2003 1 Lawson 1998 1 Schull 2003 1 O'Neill 1998 1 Soledad 2003 1 Blackman 1999 1 Hadcroft 2004 1 Hale, C 1999 1 Prince-Hughes 2004 1 Holliday Willey 1999 1 Hammerschmidt 2005 1
*Trans. from 1993 Originals