Joanne Limburg asks what it means to write as an autistic subject
It was Induction Day for the new undergraduates at the women’s college and I was to provide part of the induction, in the form of a talk on essay-writing technique.1
1. I was to talk about the importance of ‘killing the white’, of beginning somewhere. Some of us, I would explain, write ‘generatively’ – we don’t know what we think till we see what we say. I find it hard to start. But starting at the induction seems appropriate.
It was an induction day for me too, the first in my new post as Writing Fellow for this and two other colleges. Before my talk there was lunch, an opportunity to meet the teaching staff, and to introduce myself.
As it turned out, the Director of Studies in English and I had already met. She asked me if I had any books in the pipeline and I told her that I would be publishing a new collection of poetry the next year. It would be called The Autistic Alice.2
2. This is an allusion to one of my favourite books, The Annotated Alice, which contains the text of Lewis Carroll’s two classics, along with annotations in the left-hand margin of the even pages, and the right-hand margin of the odds, which Martin Gardner uses to explore the biographical, scientific, logical, satirical, literary and other allusions that pepper Carroll’s work, as well as the various discussions, artworks and controversies that have arisen from it. It’s a book of diversions. I love diversions.
I explained that ‘Alice’3 was a vehicle for exploring my own experience,4 and that I planned to explore it 5,6 further, in prose.
3. By which I mean the ‘Alice’ in my poems, who is an autobiographical figure, a persona described in the third person; the character ‘Alice’ in Carroll’s work; ‘Alice’ as used to refer to the body of work by Carroll in which the character ‘Alice’ appears; Martin Gardner’s ‘Alice’. ‘Alice’ here is less a portmanteau of a work, and more of a matryoshka doll. There are Alices within Alices, a mise en abyme of Alices, an infinite regression – Carroll would love that, though it is the kind of perplexity that might make his Alice cry. I love it and I want to cry.
4. The ‘experience’ referred to here is that of growing up with undiagnosed Asperger’s Syndrome. I appreciate that the sentence with which I began this footnote is problematic in many ways. Let me lay them out for you – well, for myself and for you. First of all, is the person who had the experience the same as the person in the present who is writing about it now? As Uta Frith did not define the concept of Asperger’s Syndrome until the 1980s, the concept was not widely understood until the 1990s, while I was born in 1970; could I have grown up with something that effectively did not exist as a category? Or was I just ‘weird’, ‘awkward’, ‘precocious’ and ‘difficult to get on with’? And can I have Asperger’s Syndrome now, after the American Psychiatric Association has deleted it from DSM-5 and absorbed those to whom it applies into the broader diagnosis of ‘Autistic Spectrum Disorder’? Can I really have Asperger’s Syndrome when I’m an adult, female, married, a mother, a teacher, a writer, not all that numerate, not all that technically minded, not terribly interested in science fiction, make eye contact, have (I hope) empathy, tell white lies, have (slowly) acquired a modicum of social and relational understanding without attending special sessions by persons specially trained to deal with persons like me and have a habit of being present in spaces where people like me are assumed not to be present? I was diagnosed at forty-two: did I have the condition before it was officially pinned to me?
5. ‘My experience’, I mean. I’m concerned that there’s a dangling modifier here. I am concerned that a) I am not making myself clear – I can never be sure, what with my difficulties with social communication, that I am making myself clear. Sometimes I think I am conveying the information that I am afraid, in pain, or angry, but my voice and my face let me down. I know this is writing, but what if my manner of expression here, too, is letting me down? What if it has always let me down and I have never realised? What if the written word is not after all the salvation that I have always hoped it would be? I have lived all my life in translation.
6. The other thing that concerns me about this possible dangling modifier is that it would constitute an error and I find it hard to forgive myself for making those. I find even the possibility that I will make errors an inhibiting prospect as I prepare to write, speak or otherwise interact.
“I’ve been wondering what it would mean to write from the perspective of an autistic subject,” I said. 7,8
7. Do I have the right to speak from this perspective? There are so many potential pitfalls. Obviously, I can only ever write from my own perspective, and I would never claim (see footnote 4) that my experience was typical or representative of that of anyone else with Asperger’s Syndrome or Autistic Spectrum Disorder. My experience (my experience – hah!) of reading work by other people with the condition has been marked often by a disconcerting sense that if what they are describing is autism, then I cannot have it: I do not, for example, have any problem with metaphor – in fact, I feel very at home in it (see what I did there?). There is an expression, ‘If you’ve met one person with autism, then you’ve met one person with autism’. When you get to the end of this essay, you will have read an essay about one person’s autism.
8. Until fairly recently, ours (ours?) was not a subject-position from which autism was usually considered. The concept was developed and defined by clinicians. When we appeared in discourse, we did so as case studies. Autism has been defined almost exclusively by what is apparent to those who do not have it. Thus, an autistic person has been one who exhibits certain characteristics: deficits (always deficits) in social communication, semantics and pragmatics, social interaction and social imagination; limited interests; repetitive behaviours. As Steve Silberman has explained in his book NeuroTribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently (2015), parents fighting for better provision for their kids (and who had themselves had the distressing experience of being blamed for their child’s condition) took up the narrative. There is plenty to read, positive, negative, or matter-of-fact, about what it is like to parent a child (almost always a child) with the condition: the sleeplessness, the disruption to family life, the distress of having a child who shows little sign of loving you back, the struggle with verbal and other learning difficulties, the frustrations and humiliations of delayed or absent toilet-training, the violent outbursts, the vicarious pain of seeing one’s child ostracised, mocked or bullied by others, the wish (in some cases) that they had never been born, that they would be taken away, that they were dead. Parents who kill their disabled children are treated sympathetically, on the whole. When I write as a person with autism, I am afraid of how my writing might appear to these parents, and of how they might react: any assertion online of anything but the negative side of autism is often met by outrage and hostility from parents who are (understandably, in my view) worn out by their efforts to care and advocate for their autistic children. I would hope that our perspectives could be seen as complementary, not as contradictory. I am not saying that I understand your child better than you do. I am not saying that we are not difficult to live with or to bring up – it is distressing indeed to have to own it, but we are. I am. I am difficult to know. I caused my parents, my brother and my extended family much pain. That I never meant to doesn’t stop me wanting to cry as I write this. They all died before I was diagnosed. I never got to explain. But I do know. I know.
“But weren’t you always writing from that perspective?” she asked. 9,10
9. See footnotes 4, 5 and 7. I replied that although, yes, by definition (arguably), I had always written from an autistic perspective, I had not done so consciously. I wanted to explore what it would mean to do so consciously. What would it mean to speak of autism in the first person singular? In the first person plural? If I can no longer say ‘we’ as a non-autistic person, who comes with me when I say ‘we’? And how far back in history can ‘we’ extend? It is an uncomfortable feeling, when one’s people have no roots. In response to ‘queer theory’, I would like to propose a ‘weird theory’ which enables one to read culture, present and historical, from the marginal perspective of autism. Using weird theory, we could claim Lewis Carroll and Martin Gardner’s books as ‘weird texts’. If I could not be a child with Asperger’s in the 1970s, then Carroll could certainly not be called ‘autistic’ in the 1860s. However, that has not stopped autistic people from claiming him as one of their (our!) own. His biography reveals a socially awkward stammerer, with unusual and obsessive interests, a gift for logic (which I found, much to my disappointment as a philosophy student, that I do not share) and a liking for the company of children. I do not believe this had anything to do with paedophilia – as many people on the spectrum will tell you, children are often easier to get on with than non-autistic adults, with their complicated, treacherous social codes. As for the ‘Alice’ of the Alice books, she could be seen (as some have) as an autistic child with a logical approach to life and a tenacious insistence on what is right and appropriate, who must navigate an unpredictable and capricious neurotypical world. I identified with her from an early age (curiouser and curiouser!), and my mother always said I was like her: curious, constantly questioning and something of a “little madam”. There was something about John Tenniel’s pictures of Alice, too, that I identified with: she did not smile, but she gazed, levelly, and so did I. (“Smile,” my teacher said to me when I was six or seven (Alice’s age) with some exasperation, “You won’t crack your jaw!” This was the teacher who, on another occasion when I had not intended to be naughty, called me, in front of the whole class, “A perfect pest”). (Though it was the headmaster of the junior school who told my mother I was “an average-intelligence child with a personality problem”. For those who hesitate to ‘label’ their children, I would say this: they are going to get labelled anyway – would you rather leave it to the amateurs?).
10. And so we come (at last – thank you for your patience, I know I do go on) to the title of the essay, ‘The Shape of the Problem’, the problem being, in this case: What would it mean to write from an autistic perspective? When I first began to suspect that I had Asperger’s Syndrome, I read a book by Julie Brown called Writers on the Spectrum: How Autism and Asperger Syndrome Have Influenced Literary Writing (2010), in which she considered the work of various writers – Carroll included, obviously – whose biographies and oeuvres she believed to be consistent with a diagnosis of autistic spectrum disorder. She identified various features in their writing: serial structures rather than plot; diversions into areas of interest (think of Melville’s whales); use of collage, pastiche, quotation and allusion – a feature she sees as akin to the echolalic aspects of autistic speech; a tendency towards autobiography; the tendency towards the exhaustive description of setting (I don’t have that one). When I think about my own relation to language and to writing in particular, I notice two things. Firstly (see note 5) my reliance on it as an alternative to spoken language, which so often lets me down (or maybe it is that I let spoken language down). When I sit and write I have the leisure to explain myself, without having to monitor my interlocutor’s facial expression as I do it (to try and pick up my mistakes in tone, register, body language etc), (although, see note 8 – if I write for any reader but myself I cannot do so free of social anxiety). I used to have a fantasy in early adolescence that I could give up speech altogether, in favour of explaining myself through writing: I could exercise so much more control that way, over my own expression and, to some extent, over other people’s reactions too. But then there’s the second thing. Freud said that a piece of language has two aspects: it is both a word presentation – a semantic thing, that means something, a unit of pragmatic exchange – and a thing presentation – an object in itself, a physical thing made of shapes on the page and sounds in the air. With this in mind, I hope you might understand what I mean if I say that I engage with language on a non-verbal level. Words for me can have meaning like a colour in a painting or a note in a song: they evoke things in me. I can sense, in a non-verbal way, inside myself, the in-itself-inarticulable shape of what I experience and what it is I mean. When I write a poem or a prose piece, I see it first as an intimation of this kind, something sensed and felt on the inside. There are some experiences that do not fit conventional rhetorical forms. If I had succeeded in making this essay compliant with them, I would have failed to convey the shape of the difficulty I was trying to articulate. It is a problem that extends not only in time but in a notional, atemporal conceptual space. And it has many wandering branches. Never mind the words. Look at the form of this piece on the page: now there is the shape of my problem.