How To Be Autistic is an important book. There are, I imagine, countless books about autism: medical books, popular science books, memoirs of the parents of autistic children, heart-warming novels about cognitively impaired savants (think of the Barry Levinson film Rain Man), and so on. Since the word autismus was coined by the Swiss psychiatrist Eugen Bleuler in 1910, a river of speech on the topic has flowed from the lips and pens of those who have worked with, cared for, or for whatever reason think they know about autistic people. What is rarely heard is the speech of those people themselves.
Such speech remains the most marginal of discourses, in a society which has been forced unwillingly over the past several decades to admit the utterances of women, blacks, queers, and other groups defined by gender, sexuality or race, to its public conversation. The autistic spectrum is more wide-ranging, more continuous and more extensive than people are generally aware, so of course there has been widely disseminated writing, scholarship, political discourse and art produced by people somewhere on that spectrum, those that have found it possible to pass as neurotypical, but it has not been acknowledged as autistic speech, and it is required to adopt neurotypical discursive norms if it is to be admitted as valid.
It now seems self-evident that it is unjust for light-skinned black people to need to pass to be treated equally, but from what I have heard it seems that the therapeutic aim of much treatment offered to autistic people is aimed at precisely that goal: at enabling them to go out in public without behaving in a manner which makes the neurotypical uncomfortable, or which draws attention to their difference. The silencing and occlusion of their speech is not only unjust, however, but it necessarily hampers any effort to understand autism, biologically, psychologically, socially, or simply as a way that a significant minority of human beings experience the world.
There is some movement towards justice. The very existence of the term ‘neurotypical’, which marks an unmarked, privileged identity, in the same way as the terms ‘white’, ‘heterosexual’ and ‘male’, renders visible the social and cultural construction of the category ‘autistic’. There can be no hard boundary around such a category, and no simple set of universal, easily discerned characteristics which place certain people unequivocally within it, and others outside it. Although there are those autistic people who appear to be ‘disabled’, there is no reason to assume that every aspect of difference in their behaviour can be ascribed to their autism, and there is equally no reason to assume that anyone who appears to be neurotypical does not perform some behaviours characteristic of the autistic spectrum.
Charlotte Amelia Poe’s voice is probably the first I have heard that proudly owns its origin in the lived experience of autism. They speak with clarity and insight, and importantly, without aping forms of speech that deny their origins in difference. There is difference in every subjectivity, but the forms of speech that are accorded the greatest status, delivered in orderly, formal prose like that which I am writing here, obscure it, pretending for the sake of reaching an audience that their originators are white, male and heterosexual. That is the speech which says ‘I have authority’, and ‘you should hear this’ – although nobody living is ever uncomplicatedly white, male, heterosexual or neurotypical. Those identities are born out of compromises and negotiations around a fundamental untruth: that anyone is identical to anyone else. The one thing you can say with certainty about an average, is that it is never found in the wild.
Personally, I’ve seized the voice of authority with both hands, and to be honest I hide my own difference behind a mass of cultural capital I’ve stolen through self-directed reading and thought – after all, don’t successful bank robbers lead middle-class lives? But I had to learn as an adult to perform this identity, this white, middle-class, male, heterosexual disguise I wear for convenience, and I feel no more identification with any of those categories than I do with the academic hierarchies I’ve quietly plundered. Like a career criminal on a Home Counties golf course, I never quite fit. My performance is a species of cowardice: my feelings towards race or class are agonistic, and towards gender or sexuality they are queered, but few people I meet would guess that. Poe’s courage in allowing the voice of their suffering to spill across the pages of their book like blood stands in stark contrast to my timid and etiolated critical speech. They issue a challenge to us all.
I can identify with many of the educational experiences Poe relates in their unaffected, conversational prose; but where the difference noted by my peers and teachers was a consequence of my upbringing, theirs was rooted in neurology, and the adjustments they were required to make were orders of magnitude greater and more damaging. They set out their experience here in a series of short, thematic essays, which do produce a chronological narrative, but which are each focussed more on describing the consequences an aspect of society’s refusal to accommodate their needs, than on moving the story on in a way which will keep us entertained. Along the way they dynamite many myths into dust.
Their empathy and compassion emerge on every page, the love they feel for those close to them, and their profound sympathy for the pain caused to those people by the complicated business of supporting them on their difficult path through life. The stereotype of the autistic person as one who does not identify emotionally with their fellow human beings is in fact a description of a psychopath, and seems a far apter characterisation of the perpetrators of the shocking injustices to which Poe has been subjected. Some teachers and fellow pupils behaved towards them in unreasonable and vindictive ways which I recognised immediately, from my own experience of attending school without having been trained to conceal my difference. Poe was frequently made to feel that their illness was a moral failing, and the trauma of their school years has clearly shaped them profoundly, leaving them with wounds that will be a long time healing. One can only wonder what such a compassionate and creative person would have done with life had they been nurtured in education, had their behaviours been accepted for what they are – the necessary performance of their self.
Poe came to publish this memoir not necessarily as a consequence of winning the inaugural Spectrum Art Award in 2018, but in the immediate aftermath of doing so. From their account, it seems unlikely that anyone was as surprised by this as them. The award is open to any adult UK artist on the autistic spectrum, which includes many people with long established artistic careers, and to hear Poe tell it, the video piece with which they won, also titled How To Be Autistic, was made with little premeditation and no background as a gallery artist at all. In fact, their memoir describes the development of their practice almost exclusively in relation to writing – particularly through the domain of fan-fiction, one of the most marginalised and unvalued forms of literary discourse.
The texture of the prose with which Poe tells their story is also, quite deliberately, not literary or authoritative, but marginal: it is carefully written, with craft and care, but it is rigorously, proudly, combatively spoken from a subject position at the very fringe of culture and society. Poe does not say ‘listen, we autistic people can talk just like you’, but ‘this is how I speak’. Gently and vulnerably, they square up, and throw the first devastating punch.
This book is important. It is important because its voice, strident and brazen, will be heard by many autistic people who thought that the voices of people like them would never be admitted to public discourse. For them, especially for notionally atypical autistic people, such as women, it will say they are equally deserving of a voice and an audience, irrespective of their difference, and it will also say that others feel what they are feeling, that others suffer and not only survive, but succeed in spite of suffering. But because Poe’s is a voice of difference, it also speaks powerfully to many who are not on the autistic spectrum: those who, like me, may feel their difference intensely, and exhibit some behaviours characteristic of autism (I took Poe’s advice to take an online AQ test, and discovered that although I’m socially confident, and scored low overall, my many ritualised, routine behaviours score high).
To us it says that autistic people may be neurologically divergent, may have a particular experience of difference which we can’t know directly, but we can put ourselves in their place; we can imagine what it is like to be compelled to behave in ways that bring us up against the hard limits of social expectation. And I think it’s likely that ‘us’ includes almost everyone. Anyone who can’t recognise any aspect of their own behaviour in a description of the autistic spectrum, or who owns no other sense of difference or otherness, is probably lying to themselves. And that’s why this book is so important, coming as it does at a time when difference is overemphasised and negatively fetishised in our societies: it teaches us that we are all the same, not because we are all the same, but because we are all different.