POETRY PROJECT ESSAY
FINNISH WRITERS ON THE SPECTRUM -
observing spontaneous creative writing among participants of a public Finnish AS/HFA Internet discussion forum
The aim of this project was to find answers to the following questions: Within the context of autistic internet culture, could obvious differences be found in the emotional experiences and self perception of the participants from a small area isolated by language as compared to the larger, multi-national, English-language forums? Could the freely and spontaneously developing autistic internet culture accept projects aiming to structure parts of it, to concentrate some of its knowledge into more accessible forms? Could individual, talented writers on the autistic spectrum benefit from having their texts jointly advertised, e.g. in the form of increased feedback, contacts and international interaction?
These proved difficult to measure in the time available, but other questions suggested themselves; how do the writings of the AS/HFA adults in this project fit the current theories on sense of self, imagination and language in autism? It seemed that research on such materials could challenge some widely held views, and lead to new ways of approaching the subject. The project was modified to also probe the autistic writers' perception of their own writing and their motives for engaging in it, to take a step in this direction.
The general context -
This author has participated in autistic net communities for six years. These are informal, not regulated by official authorities or service providers, and mainly international. Two main elements in these communities are e-mail lists, or sometimes other types of discussion forum, and websites, mostly connected by links to other websites on similar themes. The discussion forums provide peer support and opportunities for socialising, spreading information, and political activity, among other things. Websites set up by people more or less closely associated with the forums provide information for the general public, personal views, various types of artwork and autobiographical writings. They often comment critically on prevailing scientific views and directions in research, or point out injustice and inadequacy in services. Some widely known examples of these are the websites of Jim Sinclair (Sinclair, not dated), Janet “Jypsy” Norman-Bain (Norman-Bain, not dated), Larry Arnold (Arnold, not dated), Jane Meyerding (Meyerding, not dated), and Wendy Lawson (Lawson, not dated). Organisations and semi-organised groups of autistic people also run websites; for example ANI (ANI organisation) and “autistics.org” (autistics.org organisation), and in some organisations autistic people work alongside with parents and professionals - e.g. O.A.S.I.S. (OASIS organisation). Some websites are difficult to define, like for example “AS-IF” which is a database of resources and information by a single person appearing by her first name only (“Suzie”, not dated), or the apparently stable and popular (since 2002) “aspergia” (“Edan”, not dated), which seems to combine fantasy type entertainment and political views, with the organisers remaining anonymous. In effect, all these websites pass on views held in the autistic culture to new participants, and convey attitudes and knowledge influenced by autistic net culture to a wider audience, coloured by the writers' personalities and interests. Despite this being unsystematic, it is this author's impression that such sources are more up to date and representative of the variety of autistic views and experiences than opinions of a few autobiographical writers often quoted in scientific literature as examples of autistic thinking.
Three long-running international mailing lists that primarily serve the needs of autistic adults are known to this author: Autism Network International list (ANI-l), connected to the ANI organisation (ANI organisation, not dated), based in the US; Independent Living on the Autistic Spectrum (InLv)(Dekker, not dated), based in the Netherlands, and autuniv-list (Sainsbury, not dated), based in the UK. The ANI has functioned since 1992, the InLv since 1996, and the autuniv-l at least since 1997 (exact information was not available on the Internet). All these mailing lists accept members who are in some way connected to autism issues and willing to respect and communicate on the terms of the autistic members. The autuniv-l has the additional requirement of the members being in some way affiliated with higher education. All three are characterised by a set of clear rules and personal supervision by autistic moderators. Participants are expected to explain their reasons for joining to the list owner, and to introduce themselves on the list. In this author's experience, they are safer and more consistent environments than most discussion forums available on the Internet. Numerous message boards and chatrooms seem to have sprung up around the autism/AS issue over the past couple of years, and they continue to attract increasing amounts of activity. Over sixty of these are listed on the “AS-IF” information page (“Suzie”, not dated), but it's not clear how many of these are really functioning. To pick examples, “aspergia” (aspergia website, not dated) and the “asperger jungle” (asperger jungle website, not dated) and “AutisticSpectrumTreehouse” (AutisticSpectrumTreehouse website, not dated) message boards seem to have had discussion going on for a while, the latter providing statistics for over two years of activity.
These forums and websites, and their significance in many autistic people's lives, seem to go practically unnoticed by most researchers and carers. There is no research into the forums themselves, and little in the way of historical information - Dekker (1999) has described his observations of the InLv forum, and provided some background on the ANI. The nature of the forums partly prevents any research, as confidentiality is the rule; participants agree not to discuss anything said on the lists with non-members, or otherwise use information gained from them without obtaining clearly expressed consent.
The rules of InLv and autuniv-l allow people to recruit volunteers to help in study or research projects, provided the research agrees with the general principles of the lists. The rules of the ANI list expressly forbid this, which prevented also the questionnaire connected to this project being offered.
This author's observation has been, from various international forums and from a scrutiny of autistic people's personal websites on the Internet, that verse tends to appear over and over again as a way of expressing emotion. Much of it is scattered and hard to find, and part of it may never be permanently recorded. So far, this author has been able to locate seven websites containing “collections” of varying sizes: Larry Arnold (Arnold, not dated), Dave Spicer (Spicer, not dated), Jerry Newport (Newport, not dated), Ralph Smith (Smith, not dated), Wendy Lawson (Lawson, not dated), David Miedzianik (Miedzianik, not dated) and Aaron Bar-David (Bar-David, not dated). Baggs (2003 a) has compiled a list of books written by authors known to be autistic, along with an article remarking on the lack of attention and recognition they receive (Baggs, 2003 b). At a quick glance, at least six autistic poets writing in English have published printed works, including David Eastham who was probably the first person ever to publish while having a recognised autism diagnosis (Eastham, 1985). A superficial scanning of books available for sale on the Internet shows that new collections of poetry by autistic people continue to be published, albeit at a fairly slow rate.
The Finnish discussion forum -
The Finnish discussion forum, started in 1998 and maintained ever since by Janne Vuorinen, (Vuorinen, not dated) differs from the international forums in some important aspects. It has developed in relative isolation, probably due to most participants not feeling confident enough with their English expression to participate on the international forums. The terminology used differs slightly from the rest of the world. While the term “autism” is widely used in the international context to cover the whole spectrum, the Finnish forum is called (loosely translated) “Meeting place for people with Asperger Syndrome”, and people more readily identify with this term than an all-inclusive autism label. The Finnish forum is an open, message board type website where anyone can subscribe to participate, and messages are available for non-subscribers to read. It is thus much more public than the traditional mailing lists.
Supervision and moderation is present on the Finnish forum, but there are at least so far no set rules concerning for example the recruiting of volunteers for research. Attitudes towards all kinds of research have been quite positive. Discussions on personal problems have been remarkably open, with some participants using their real names and even photographs, effectively making their views fully public. This and the long-term stability probably make the forum different from the English language message boards. It is somewhat difficult to find information on the history of these, but anonymity certainly seems to be the rule; in most of these, it would take some time to even figure out which countries are represented. The Finnish language creates a different situation. It is unlikely that any of the discussions would spread outside the population of about five million Finnish speakers. Finland is probably perceived as relatively safe compared to the broader English-speaking Internet environment, as it is a relatively wealthy country with low crime rates, and also producing hardly any autism research that could be perceived as offensive.
Personal websites where the owner publicly identifies as having AS or autism, and presents factual information or political or scientific criticism, are very few. This may not be perceived as a serious channel for such activities in the Finnish culture. The Finnish discussion board has been particularly productive in producing verse over the past year. In July 2003, when the samples for this project were collected, there were about 110 pieces of verse by 13 different writers in the poetry thread of the forum, which had been started in September 2002, along with scattered ones in other threads. On December 2nd 2003, the thread contained 226 replies, of which only a few were comments on other people's text; most were original, creative writing. While those who write fictional or autobiographical prose seem to be extremely rare - at least those that share these with others - there seems to be something in the poetic form that appeals. Some examples of short prose have also started to emerge, occasionally as an interactive process between various participants.
Some of the features present in the Finnish forum might be particularly conducive to creative writing. The messages remain on the website, forming a permanent, visually navigable record of past discussions. Discussion threads containing creative writing are thus easily available if people want to return to them infrequently. Previous postings by the writer him/herself and others could provide focus, inspiration and encouragement, as affirmations of the fact that there are others struggling with similar issues and emotions. Along with the knowledge of the limited size of the Finnish-speaking internet community, this seems to have produced a relaxed environment.
With the situation described above as a starting point, an action research project was initiated. This author's position could be defined as participant observer. A basic claim inherent in this approach is that valid information can be obtained from inside a partly isolated group, by observing cultural phenomena connected to autism as an autistic person.
In order to look at imagination and creativity in autistic people, looking at creative work that has been spontaneously produced by autistic people in their own environments might be the only way to get a complete picture of what they are capable of. Looking at research literature on narrative skills (e.g. Capps et al, 2000; Losh and Capps, 2003), and imagination (e.g. Craig and Baron-Cohen, 1999), this author was struck by how the experimental settings are always basically social situations, with elements potentially placing pressure on the subjects. Praise and verbal encouragement are used to prompt production of responses within a very limited time, in the presence of other people, and speedy production of novel responses to stimuli given by another person is taken as a reasonable measure or imaginative fluency (Craig and Baron-Cohen, 1999), for example. This kind of approach excludes the possibility of autistic people being simply slower in their imaginative activity, or more inhibited by social situations, or less able to work with a starting point given to them as opposed to a self-generated one. Williams (2002) has written at length about the effects of praise on some autistic people; how any direct feedback can be aversive, in forcing the person to become more self-aware than he or she can comfortably handle. She says:
“I felt like I was being force-fed, forced to take, to accept. It compelled a sort of emotional vomit reaction in me,
and I was compelled to spit the invasion back out at the giver. When people used my name as part of the compliment they
compounded difficulty accepting the experience of the name associated with myself.” (Williams, 2002, p. 117)
This has not been connected to any specific research, and despite similarities it is hard to fathom the possible connections with earlier theories on self or emotional reactions in autism, due to a complete lack of references in Williams's text. Nevertheless, this is an experience that many autistic people recognise. In this author's view, research done on imagination in autism will not be credible unless the possibility of such emotional reactions is considered in the experimental setup. This view is supported by the observations of Dowker et al (1996).
While there seem to be similarities in autistic forums besides the fairly frequent appearance of verse as a form of emotional expression, most of their features would be rather difficult to compare. Discussions tend to be lengthy, rambling and coloured by interaction between personalities, and they tend to touch upon several individuals, which would make obtaining consent to use such materials complicated. When writing verse, autistic people - as others - tend to concentrate what they have to say, to polish the expression and focus on what is seems essential in their experience, and to aim what they have to say to more than one person. Short stories, or fragments of longer ones, could serve the same purpose, but there simply don't seem to be many available.
The approach chosen by this author may seem elitist in that it selects some of the most verbally able to represent the whole group, and probably picks people who are among the most able and culturally aware to answer the questionnaire. Yet this author believes that the autistic spectrum does not differ from the rest of the population in that a few artistically gifted individuals can sometimes express the emotions of the majority. There are popular opinion leaders within the culture, and despite the general dislike for hierarchy or overt attempts to control (Dekker, 1999), talent and succinct expression gain general respect and attention. By looking at what is perceived as unusually good, entertaining, moving or artistic by the autistic community, this author believes we could begin to find ways to motivate and inspire more expression. The conscious aim is thus to select as both writers and readers the more communicative and articulate, who might convey ideas between countries, not examples of the average discussion forum user - if such a thing even exists.
The project was originally intended to consist of five stages; in the first one, texts - mainly verse - were requested, partly selected from among those that had appeared on the Finnish discussion forum, and consent was obtained to use them, describing briefly the purpose of the project. In the second stage, the texts were translated and a website was designed to publish both the original Finnish texts and the translations. A brief questionnaire concerning the website was devised, and as the fourth stage, volunteers were recruited from autism forums to answer the questions, and if they wished, to write their comments in a guest book on the website itself. Finally, the answers were compared and analysed. Due to the small amount of feedback (although positive and introspective), an additional element was added: the writers who had contributed to the project were interviewed about their motives for writing and their own perceptions of their style.
This approach combines what could be seen as three basic “practises” in the Internet culture: gathering information through discussion with participants who have similar interests, collecting material perceived as significant on a website for the benefit of a wider audience, and attempting to gain the attention of target audiences. The only difference from what this author would usually do in such contexts was the imposition of a more systematic approach and analysis on the process.
Introducing the project and collecting text samples
The first questions to be posed were to members of the Finnish discussion board who had posted poetry on the board. A brief description of the project was posted on the board, in a thread previously established by another participant as the place for study project related matters.
Translation of the project introduction:
"I am studying in a program on autism and Asperger syndrome at the University of Birmingham (distance study). For my studies I am doing a practical project, which I intend to complete during May or June. As my project, I have planned the following:
I would like to collect brief fictional or autobiographical texts from Finnish adults with Asperger syndrome, in order to display them on a website to be created for this purpose. I would like to translate these, or have them translated, to English, and to tell international AS/autism forums about the website. The aim would be create a link between the Finnish and international AS cultures - to get some deserved feedback and attention for good writers, and to give the rest of the world an idea about what is happening here. If possible, I would also like to get a professional writer to give feedback to those who wish to have it, and to attract the attention of potential publishers.
So, if there are people who have a text, or a part of one, that you would like to use to advertise yourself or just share otherwise, let me know.
More information about me can be found in the “introductions” thread."
The “introductions” thread referred to contains autobiographical details and facts about the author's studies, published writings and association activities. The message was later updated to inform about delay in finishing the project.
Two writers approached the author to offer material themselves. The rest were approached by personal e-mail, guiding them to read the above text. All those to whom the request was sent were willing to allow their text to be used. No selection was done concerning style or content as such. All writers who at the time had posted at least a few serious attempts at verse were approached, with two exceptions; when all the poems centred around puns, idioms and phonetic effects in Finnish, making them extremely difficult to translate, or when there were only one or two very short texts posted, the writer was excluded. In most cases, he text samples were largely selected by this author, picking ones that seemed representative of each writer's style, and translatable.
One writer offered new, previously unpublished verse in addition to the earlier material already on the discussion board, one offered new material to be used exclusively instead of the old, and one offered a short sample of prose, the only text of this type available at the time. These were all included.
The author translated the texts, had the translations checked by a native English speaker with some experience at writing verse, and submitted the translations back to the writers for approval. All except one accepted the translations without changes. With one writer, the details of the text were discussed by email, when retaining rhythm and rhyme required compromising the exact original meaning, and as a result one translation was modified.
The website that contains the texts, at http://users.kymp.net/mode0095/asfiction/texts.htm , was designed with the aims of making it easily navigable and reasonably quick to load even with low capacity computers and connections. Visually distracting elements were kept to a minimum; a printout of the front page, containing the maximum number of visual elements on any page on the site, illustrates this (appendix 1); the picture on the bottom right shows the page background colour, which could not be printed. Background colours were used to slightly reduce the contrast between text and background, since some autistic people find black on white uncomfortable to read. A printout of a sample text page illustrates the number of visual elements present when reading the actual texts (appendix 2) - the background colour on these is of similar intensity with the front page, but different colour. Designed the way it is, the website should be accessible and readable to as many people on the autistic spectrum as possible. The basic architecture of the site was kindly provided by one of the writers participating in the project. The writers' comments on the finished website were requested before proceeding to the next stage, and no objections to the visual style were expressed.
At the end of the project, the website was left running, with a guest book and an option to give feedback to the writers, the author providing translation and moderation if necessary. The site will be maintained and new text samples will be added, in the hope that with time it could help establish international connections and spur discussion on autism forums, as well as function as a resource for anyone interested in the subject.
General characteristics of the text samples
This author's impression is that some of the writers who contributed to this project show some discrepancy between their creative writing and their lack of effectiveness in everyday communication. A similar effect was noted in the one research article on the subject available by searching medical databases (Dowker et al, 1996). The single savant poet observed in it was noted to have performed “less efficiently on formal language tests supposed to tap creativity” than the control person with a comparable level of writing skill. Making autistic writers' poetry more public could help change public perception of autistic people in general, informing people about possible “islets of ability” outside subjects usually connected with savant ability. Thus the project can also function as an illustration of “different” ability with language instead of “lack of or deficiency in”, which in clinical settings may be the only thing that is looked for or detectable with existing tests.
The texts seem to handle issues and serve purposes that poetry and storytelling generally do: expressing emotion, defining identity and making statements about societal phenomena, experimenting with language and pushing the limits of expression. What seems typical of autistic people's poetry, judging by this limited sample and supported by research on the language of autistic children (Lee et al, 1994; Jordan, 1989), is a tendency to retreat to dealing with the self in third person in some situations. This would seem to get more pronounced as the subject matter gets more anxiety-provoking. The Finnish language allows the omission of subject pronouns and the use of a variety of passive forms more easily than English, with the result still sounding reasonably natural. This means that some of the devices autistic people might prefer in Finnish are difficult to translate and end up sounding either more “personal” or more awkward than the original. Similarly, a possessive suffix in Finnish can often be dropped more easily than the pronoun “my” in English, and this is indeed often done by the writers. The impression in Finnish is that of mild detachment, but in English the effect is either lost or becomes more obvious and slightly unnatural; for example phrases like “on the face an ever-present three-day stubble” or “the whole body aches so” represent compromises where the definite article has been used to indicate the lack of indication of ownership; an alternative way to deal with this in English could have been to switch to third person entirely. Such features raise questions about the culture and language dependency of the language characteristics in autism - a way of viewing situations that leads to merely “peculiar” or “arty” sounding expressions in one language might lead to “deficient” expressions in another. To investigate this further, larger samples of autistic people's texts in different languages would need to be compared.
A broad range of personalities is obvious in even a sample of this size, reflected in the variety of styles the writers have chosen to develop. A modern, fairly free form type of expression is most common, but one writer, J. Vallikari, also produces very formal poetry with carefully constructed meter and rhyme. The degree of freedom in the free form also varies. Johanna exemplifies a slightly conservative approach maintaining consistent rhythm and a kind of a storytelling/autobiographical quality in her relatively long poems. Ari builds his expression on slightly cryptic metaphor and highly original, idiosyncratic imagery. Heidi uses little of either, but seems to focus instead on honest and blunt description of inner experience, with the form perhaps being of secondary importance and left to arise naturally from the message. Selma seems spontaneous and impressionistic, experimenting with a style that approaches prose poetry. Venla maintains a kind of musical quality, with attention on shifting and changing rhythms, while not sticking strictly to any particular meter.
Overall, metaphor is present more often than absent, which is also the long-term situation in the poetry thread on the discussion forum. Even the one-page story by Minna is allegorical, and resembles the poetry in consciously stretching the limits of conventional expression, for example by addressing the reader directly as “you”. Although possibly literal-minded in some situations, the majority of autistic writers seem to choose from a wide selection indirect expression to create something that to them is entertaining, or to handle emotionally significant subject matter. The emotional impression one gets varies from deadly serious and depressed to happily engaged in aesthetic impressions, or light-hearted playfulness. One could conclude that for a group of amateur writers, there is no evidence of the expression being particularly limited in its range of styles or emotional content. Nothing suggests that any of the writing is “merely reproductive” or “parasitic” in the sense suggested by Powell et al (2000).
Interviewing mailing list participants
An attempt was made to recruit volunteers to help with the project by posting a message on the autuniv-l and InLv mailing lists, stating essentially the following (the text was modified slightly between the two postings to make it shorter, but the facts expressed in it remained essentially the same):
[subject line]study project
My name is Heta Pukki, I am from Finland and diagnosed with AS, currently studying autism and AS in adults. As a study project for the University of Birmingham, I have collected and translated to English some texts, mainly samples of poetry that people have posted on a Finnish autism/AS internet forum. I'm interested in seeing how the experiences and emotional expression of people from our small, relatively isolated net community compare with those from larger forums. I'm also trying to find out whether this type of project generally would be acceptable in the net culture, and possibly benefit the participants.
To read the texts, go to
If you then wish to help me, send email to email@example.com. In reply, I will send you a few questions concerning the website. These should take no more than 20 min to answer. I don't need to know anyone's name or other personal information that could be used to identify you. Negative feedback is just as welcome as positive.
On the ANI list, the website address was posted along with a brief comment about the purpose of the project, but no request for volunteers, as the list rules prohibit this. No responses regarding the project were received from there.
The people who expressed interest were sent a questionnaire by email (appendix 3).
This approach was not received with great enthusiasm. It appears to be an ineffective method to probe attitudes on the mailing lists, but on the other hand it didn't seem to cause any offence, so it might be possible to modify it to come up with something usable.
Responses from the mailing lists
Two people from the InLv list responded; one was sent the questionnaire, which was not returned; one requested the poetry translations because of being unable to access the website, and having received them commented briefly but positively.
Four people from the autuniv-list responded to the request for volunteers, in addition to some discussion related to the subject matter happening on the mailing list. Two people returned the form, one with brief answers, as had been intended by the author, and one with extensive comments. The latter proved to be the most useful feedback obtained from the net forums, as the writer has a good knowledge of literature and poetry, along with writing experience of his own. A couple of positive comments also appeared in the website guest book.
In both replies to the questionnaire, the website was rated very positively; the overall content and website characteristics as “fairly good” and the possible effects within the net culture as “very good”. In both replies, some of the texts were considered to express autism as the readers understand it, yet contain also novel ideas, and to have emotional content they could relate to. Writers gaining recognition and experiences being shared by autistic people were both seen as important, the relative importance depending on the individual, or the “interests and objectives of both readers and writers”, as one interviewee put it. Both would also recommend the site to others, but there was some uncertainty regarding whether they would read more themselves. One of the interviewees would consider participating in a similar project as a writer, the other would not.
In retrospect, the sparseness of responses could have been anticipated. There are not usually very many active participants on the lists at any one time, although over long time periods considerable numbers of people participate. Only a fraction of those present will be interested in fiction or poetry, and of these not all will be able to afford the time and concentration to read and think about the material. Some might be reluctant to voice negative opinions, or feel as the one person who sent long answers did, that the matter should not be handled superficially. They might not return a reply unless they can manage writing one they find satisfactory to themselves.
The overall impression is that a lot more time would have to be invested in simply getting responses. The list members are not exactly reluctant to give their opinions, but instead of a questionnaire, real-time online interviews on the Internet might work. These would probably be more effective in maintaining autistic people's attention and allow immediate clarification of any vagueness in the questions, as well as feedback on the depth and extent of the reply.
With regard to the writers gaining contacts and recognition, the positive tone of all the responses is encouraging. However, it is obvious that little publicity can be gained simply by “advertising” on the mailing lists. To make the website available to more readers specifically interested in poetry and fiction, it has been added to the link lists of the “autistics.org” database and the “AS-IF” website, and it has also been offered to the link list on the Finnish Autism and AS Association website (Autismi- ja Aspergerliitto, not dated).
What remains to be seen is whether the project can bring any benefit to these people who contributed to it, or whether it could do so with some modification of the current concept. Since the feedback was scant, the texts were also submitted to a professional critique service. The replies from this will be posted to any writers who wish to have them. Some of the writers expressed satisfaction with such simple aspects of the project as translations of their work being interesting for them to read, and the visual style of the website being pleasant. More samples of text have also been offered, and new writers have been suggested to the author as deserving to be included. Thus it seems that the project was generally perceived as positive, and some small intrinsic reward can be present in just contributing as a writer.
The positive comments and some observations on style from the mailing lists were passed on to the writers, who received them with obvious interest. Concentrating on building very individual, personal contacts to discuss writing could turn out to be more useful for them than trying to obtain overall ratings from mailing list participants.
The one in-depth reply to the questionnaire included several points about the usefulness and limitations of this type of website, and who it might appeal to. Similar concerns have been expressed in this author's discussions with some autistic Finnish writers who were did not participate in this project. The overall impression one gets is that the autistic community is generally well aware of these issues, and the reply is fairly representative of the views held on the mailing lists. The perception of possible benefits went slightly beyond what this author had originally in mind; to quote the thorough interview response:
“More, more types and different levels of art should be available… … I like looking at painting and writing from autistic people of all regions on the spectrum and of all abilities, to see if it gives me clues about autism itself. I think it would give people a different outlook on autism if they could see that we paint and write and do so in various ways and exhibit various degrees of ability just like they do. It may come as a shock to some that we are not all savants, and to others that we may have better skills than they do in certain subjects. It may teach them that we are not all just walking DSM-diagnoses or live handbook characters.”
A major issue is the label/ non label question; some writers feel they do not want to become known specifically as autistic writers, as this could have a negative effect on how their work is perceived and even limit their chances of being seen as serious writers. As the interviewee expressed it:
“ So I don't think I'd submit my work to a site specifically dedicated to autistic art. On the whole I'd prefer to be known as a good artist, rather than as an autistic artist. I'd prefer people to judge me on the basis of the quality of my work rather than on the fact that it was made by an AS person…
… I suppose you could try and seek recognition through the internet and through such a site, but if you really seek wider recognition you'd have to step outside autism-specific environments… If you are interested in this kind of recognition, publishing on an autism site might work against you. “
On the other hand, any possible effects within the autism community were seen as clearly positive:
“For autistic people themselves such a site would be a good idea. In this way you can access a public that shares some experiences and characteristics with yourself and who will be able to understand you much better than NT's will. You would be able to share your work and talk about it with other people in comparable situations. I think it will fill a void which currently exists, where people with autism are seen as basically without creative urges and without possibilities other than technical skill.
This way you get a much more varied idea of autistic writing. Up till now, it is mainly people with the kind of talent that is also accessible to NT's that get published. This gives a lopsided impression of what autistic writing can be.”
The interviewee also commented on the various styles of writing, observing a duality; on the one hand there is a very straightforward “HFA” style, using relatively short sentences and little metaphor, concentrating on concrete or emotional experiences, and on the other hand an elaborate “AS” style, grammatically complex and focusing on building extended abstract metaphor. While these may not indicate a clear division between AS and HFA - if such a division indeed truly exists - this author has to agree that the duality seems fairly obvious, and most writers seem consistent in this respect over long periods of time, even when their style changes otherwise. It could thus reflect an underlying duality in language-related cognition within the autistic spectrum.
Interviewing the writers; questions and responses
The writers were sent the following interview questions by e-mail, along with an explanation that responses from the mailing lists had been few and that the project had been modified, and assurance that all information would be presented so that it can't be connected to individuals.
1) Year of birth?
2) How long approximately have you been writing (of your own initiative, not counting school and study assignments)?
3) What do you get out of writing, primarily - does it serve for example clarifying thoughts, handling emotions, commenting on injustice, or various purposes?
4) How would you define your style of writing, if you define it at all?
5) Where do you get influences for your writing?
6) Do you usually have some target audience in mind when you write?
7) Have you had any training in writing, and would you have some (or more) if you could?
8) Would you like to have your writings published in print in the future, or to have them otherwise more widely publicised?
Five of the seven writers replied to these questions. The ages of these five range from 32 to 38. Four of them reported to have written for considerable periods of time, 16 to 20 years - some specified that part of this time was active, part occasional writing - and one reported just having written actively for less than two years.
All writers mentioned clarifying experiences or communication as one of the reasons for writing. While the question concerning this may have been leading, most writers elaborated on this in their own words, giving the impression that this was indeed a major factor. The emotional tone of the texts is obvious, and the replies reflected consciousness of this; communicating or processing emotion was also mentioned, in some form, by all five; one expressed this as “unravelling emotions and transforming them into memories: a clear rhythm instead of a chaos circling in the mind”. Three of the writers mentioned a need for aesthetic self-expression. Some motives came up only once, such as “rich expression without the disturbing effects of nonverbal communication etc”, “societal criticism”, “play with intellectual concepts and musical qualities of language”, “outlet for impulsivity” and “balancing obsessive and depressive tendencies”. It seems that writing, for this group at least, may have originated as something immediately functional, aimed at having an effect on the writer, or serving as an alternative form of communication, rather than designed to impress or entertain a target audience. Performance or entertainment aspects could then have emerged with time, as the writers become fairly confident in their style.
The replies to the question on style were more or less variations on a single theme, succinctly expressed in one answer: “Good heavens… I don't know what it is”. All five seemed vague and relatively unspecific, using adjectives or very general terms at most: “varied”, “from colourful to bone dry”, “mainly short free form verse”. One mentioned consciously getting rid of obsessively doing formal, rhyming verse. None seemed to identify with any particular era or school of writing; none used words like modern, post-modern, romantic, minimalist, for example, to characterise themselves. This very much ties in with the next question. The vagueness in describing style was matched by a lack of awareness of direct influences, summarised pretty much in the comment: “I guess one gets influences from the environment all the time, but I don't feel I follow any writer's style, or get influences from anybody in my texts”. Two writers mentioned “literature” without specifying further. Only one described clear sources, mentioning names, but in this case these were quite numerous and representing a fairly broad variety of styles.
This author feels that the replies might reflect something autism specific, namely a degree of disconnectedness from the surrounding culture. While the writers have potential, and most would like to publish in some form, they seem relatively unconcerned about how their writing fits in with contemporary ideas in their surrounding culture. “Raw”, spontaneous and untrained expression seems to be somewhat idealised, and outside influences are seen as somehow tainting this and perhaps reducing the value of the product. Why this is so, and whether this is something specific to Finland, would require more observations to be made, but as a hypothesis this author would suggest that autistic people prefer a kind of honest simplicity, perhaps unconsciously. A text representing some kind of inner truth of a single person, instead of a variety of cultural influences, could be perceived as more clarifying and informative, and thus more valuable, than a text which confuses the already difficult social reality.
Regarding target audience, the replies varied. One writer has no specific target audience in mind. For two, the effect on self is perceived as the most significant, but one of these expressed also a wish that “people going through similar experiences” might read. Two writers specifically target other autistic adults at least part of the time. Only one mentioned “nt people who don't understand”.
None of the writers had had specific training in writing. Two of them clearly wished to participate in some kind of training to develop further. One felt this could be an option if it were available at a convenient time. Two writers felt they do not want any training at the moment, wanting to avoid outside influences - a “fear of copying styles” was specifically mentioned. Combined with a lack of consciousness about past influences, this could suggest an awareness of difficulty in keeping track of influences, or a tendency to become too absorbed in others' ideas to stick to one's personal expression. Other writers who post in the discussion forum poetry thread, however, don't seem to be perceived as this threatening, and indeed personal styles seem to be quite stably maintained over time, or developed gradually in their own directions without starting to resemble each other appreciably.
Four of the five writers wished they could publish their works in the future for a broader audience, which seems slightly contradictory considering the responses on perceived target audience. Two appeared to have a clear interest in becoming more professional, and even earning part of their living from writing. The one writer who had no ambitions regarding publishing chooses to spread the work randomly, hoping it might help to find people with a similar mindset to connect with, rather than gain publicity. Three writers turned out to have already had some of their work printed, but no one had done a collection of poems or other sizable works of fiction. Published poems had appeared for example in newspapers, magazines and newsletters.
The observations from this project, although limited, suggest that attitudes towards participating in such moderately structured projects are positive or neutral in the net communities. In this author's view, research into aspects of autism communities would probably be tolerated as long as autistic people are not defined as just objects in them, but as active participants whose individual contributions are recognised. A socio-cultural or anthropological approach may be both more easily accepted and more fruitful than a medical or educational approach. With sufficient development of the concept, participants could probably benefit from contributing to this type of project.
Features of imagination are used as one of the criteria in autism diagnosis, yet imagination is such an elusive concept that the actual quality of the difference from normal is very hard to define. Observation of fiction written by autistic people, such as the small sample in this project and the ones available on the Internet, inevitably lead one to wonder where exactly the deficiency is supposed to be, especially considering the fact that some writers aspiring to professionalism may deliberately avoid the autism label. Murray (not dated) has argued that the current research tools used to measure creativity, as exemplified by the study of Craig and Baron-Cohen (1999) cannot detect the particular type of imagination present in autistic people. Furthermore, Murray and Lesser have illustrated how shows of creativity and playfulness can be elicited from autistic children simply by providing them with a comfortable environment and tools that suit their favourite modes of expression, and by avoiding intrusive and aggressive means of communication (Murray and Lesser; Murray, 2001). One might assume that to support a sense of self in autistic people, carers and educators could learn from the environments set up autistic people for themselves. By modelling more structured, protected environments on the principles derived from successful, stable autism mailing lists and message boards, autistic people with more severe communication difficulties could possibly also be prompted along the way to shaping their own sense of self.
If some features of the emotional expression arising on the various internet forums were found to be universally typical of autism, in the sense of being appealing and comprehensible to autistic people independent of their local culture, these could provide a key to something more. They could be used to educate young autistic people, providing them from early on with vocabularies of emotional expression. For example, having verbal definitions to deal with the common experience of a “detached” or “autopilot” state, and examples of others' interpretations of it, could help young people to form a clear attitude to such experiences and feel less threatened by them. In a way, this is of course being tested already when young autistic people join net communities. What is completely missing is research into what effect this is having on their development and self image, and what determines whether an individual benefits from these or not. A further development of this project might involve something like introducing products of the net culture to autistic people who have had no access to it, for example newly diagnosed ones, and interviewing them to probe their perceptions and any possible changes that may happen upon encountering the autistic community. This could help research in beginning to further define an element of autism that is often mentioned but never really analysed; the basic difference in attributing emotional significance, as compared to normal.
This author (essay 2003, unpublished) has argued before that while a consistent sense of “experiencing self” may indeed be weak in autistic people, it cannot really be instilled from the outside by carers and educators, as Jordan et al (1999) suggest should be done as part of special education. This project illustrates how many autistic people may possess a particular kind of self-awareness independent of any outside guidance.
The writings of autistic people observed by this author seem to focus heavily on clarifying experiences where self has a central role. The five writers in this project who replied to interview questions showed a clear awareness that this kind of process was involved. A relative focus on self as opposed to descriptions of others was also noted by Dowker et al (1996). Observing the seven collections of poems available on the Internet, mentioned in the introduction, reinforces the impression that this is a very common feature in autistic writing, but not entirely universal. The styles of these writers range from apparently unprocessed stream-of-consciousness diary (Miedzianik) to polished verse hiding possible self-observations in complex playful imagery (Newport, Smith); a minor part of the poetry deals with neither self nor autism in any obvious way.
Considering this abundance of direct processing of self-related experiences in connection with research on autonoetic memory in autism (Bowler et al, 2000; Millward et al, 2000), one might question the purposes of poetry from the autistic person's point of view. Are these the same as the non-autistic person's? Is the absorption in own experiences just the result of isolation, or not perceiving social and cultural norms that usually steer writers away from this, or is there an additional motivation, the verse form perhaps supporting or utilizing memory functions outside an area of relative weakness? Could the systematic structuring of surface features of language actually help an autistic person describe past events more comprehensibly to himself or herself? If so, could tools for special education be derived from autistic poetry? Research on larger samples, with more detailed and systematic interviews of both writers and readers, could help answer such questions.
The sample texts and interview replies suggest no confusion regarding self as a centre of experience as such. The writers' responses reveal that events have to be organised and assembled for the self, or the self has to be redefined, when something emotionally significant has happened; there would be no motivation to go through such a process without a sense of importance attributed to the self, a need for a sense of agency at least if not a reliable ability to maintain it. Experiences of a temporary “loss of self”, or an inability to relate to events emotionally, abound in this project as they do in other autistic people's writing, but these would also hardly be either worth reporting or possible to describe if this were the writers' permanent state of existence. Also, there seems to be no lack of a sense of agency which Hobson (1993) claims to be common, when it comes to writings such as the ones used in this project. Hobson states that:
"Normal children are passionate in their pride and possessiveness, their self-assertiveness and opposition… In many autistic individuals, such motivational and emotional investment in the self vis-à-vis others seems hardly there at all. I believe that children with autism do have difficulties in conceiving of themselves as “selves”, but this cognitive difficulty is closely allied to their lack of engagement not only with other people, but also with themselves as “selves”. (Hobson, 1993, p.199)
When interacting with autistic writers, one gets a sense that unauthorised copying would definitely not be tolerated. Skill that could lead to publishing is treated very much like a possession of value, and personal style a matter of pride, something to be nurtured and protected. Creative writings can also be perceived as such an integral part of self that they shouldn't be sold, as they can be a means to share something of one's most essential being with other people, when other means may be limited. One could assume that the writers portrayed are at one extreme end of the autistic spectrum, and that most autistic people have less sense of self than they do. In this author's view it is more likely the writers are quite representative except for their high verbal abilities, and that most autistic people experience fluctuation rather than a consistent deficiency in their ability to maintain a coherent sense of self. In essence, this author would suggest that relative weakness in autonoetic memory, and a general disposition towards the physical or an idiosyncratic imaginative world rather than the social, would have to create a different “environment” for a perception of self to exist. In other words, the autistic self would have to have different boundaries compared to the normal, which could then show as, for example, relative lack of concern for the body as something only vaguely identified as “part of or serving self”, and instead great concern for objects, routines or products of imagination that become identified as “central to self”. To borrow Hobson's terminology, it could be assumed that the autistic person's tendency to handle the world as “I-it” relationships occasionally extends to within the “normal” boundaries of self, with a major part of bodily and cognitive functions being treated as “it”, outside the limits of self perceived at that moment. Furthermore, this author would suggest that creative activity, and comfortable forms of play and social interaction are the best means of strengthening and regaining a true sense of self that is optimally functional for an autistic person, instead of trying to teach autistic people to display normal boundaries.
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