Neuro-Revolutionaries: Listening to the Actually Autistic

David Hartley
Aug 22, 2017 · 21 min read

What the neurotypical need to learn about not being neurotypical

Autism is Awesome: from ‘Adventures of a Super Aspie Girl’ by Annette Foster (Visual and Performance Artist, PhD Researcher & Autistic Self Advocate)

We’re in a small, dimly-lit seminar room with an unused flip-board, stack-able chairs arranged in a wide circle, no tables. The main strip lights above us are off, the ones towards the back of the room on, illuminating empty space. The people in here are scattershot; some on the floor, some lurking in the deeper shadows, some standing, but all the chairs are taken and the discussion is well under way. I’m clutching a notepad and pen, not really writing anything down. The debate swings dizzyingly from concept to concept, two academics dominating most of discussion but not in a way which excludes others, more that they can barely contain their thoughts as they come cartwheeling from brain to lips. Hands raise to make points and the organiser is diligent in ensuring that everyone gets the time to make their contribution. There’s an energetic camaraderie in the room. Flapped hands signal approval, laughs are bright and full, grins are frequent. And whenever a term or thought is misunderstood there is no hesitancy to ask for clarification which, in turn, is gladly given. It is a refreshingly balanced way of conducting an academic debate.

The discussion centers on a presentation held half an hour previously which concerned the place of autism in neoliberalism and it has sparked all manner of questions about what constitutes both autism and neoliberalism and much more besides. I don’t make a sound, just try to absorb. There are around thirty people in the room and I, unbeknown to the others, am the only one who is not autistic.

I become increasingly aware of my presence, especially as the word ‘neurotypical’ (people who are not autistic) arises time and again, often with an air of derision. Should I declare my presence? Or would that derail the freedom of the discussion? This is autistic space, a place where those of a neuro-atypical mind have gathered in the ongoing effort to carve out an autistic identity, proudly separate from typicality but also, in a way, striving towards it. There is a desperate desire here for a greater understanding and acceptance of neurological difference, but also a defiant pride in that difference. These are the people seeking autism acceptance rather than awareness, tweeters with #ActuallyAutistic in their bios. They hail from the multiple nuances of gender and age which are befitting of a condition which is defined by the multiple nuance of itself. As the old adage in this community goes; when you’ve met one person with autism, you’ve met one person with autism. It is a condition which I’m increasingly feeling is becoming the last word in diversity as it is itself so endlessly diverse. As such, I don’t at this point feel worthy or brave enough to pierce the bubble. So, I remain quiet and I listen. My opinion, in this setting, matters less.

This is but one of the discussion sessions scheduled as part of Autscape, the annual conference-cum-retreat organised by autistic people, for autistic people. NTs like myself are welcome to attend but the focus is entirely on the celebration and well-being of individuals on the autistic spectrum led by those who know it best. Not the autism experts, not the parents; the autists themselves. This is why our room is dimly-lit; to accommodate those who are particularly sensitive to halogen strip lights. This is why people flap their hands when they agree with a point or want to celebrate a joke; the sudden snap and crack of clapping has been outlawed.

I am here because, in the morning of the following day, I will be giving a presentation of my own. I am currently in the early stages of a Creative Writing PhD at the University of Manchester where I am researching and writing about autism. I have an autistic sister and I’m attempting to write a fantasy novel based on our childhood together. My presentation for Autscape will aim to chart the approach I’m taking to tackling a novel about autism and how I’m trying to avoid the various clichés which continue to percolate in popular representations (more on this later. I’m looking at you Atypical). The presentation will be the last one of the conference, but I have come a day early in order to spend some time among autists in this hallowed slice of autistic utopia.

I was nervous about my presentation, but even more so now. These minds are alive and poised, very much at the vanguard of the lived autistic experience. They have lances pointed at some of the most venerable names in the studies of autism; those in the medical establishment as well as the social sciences and, like me, in the study of culture. Names of academics who have been so key to the early stages of my research send groans of derision around the group. I hear anecdotes of dismissed and excluded autistic academics who have long tried to argue against the established theories and either seen their writings ignored or worse, stolen.

Autists have a long history of battling with academic experts so the frustration should really come as no surprise. From day one, when autism was first coined by Leo Kanner and Hans Asperger in the 1940s, the condition has been disproportionately plagued with damaging theories and violent falsehoods. Abusive therapies aimed at ‘correcting’ the ‘abnormal’, the vehement hunt for cures, a succession of parent-blaming narratives and, as a final wounding, the cockeyed but entrenched depiction of autism in popular culture, riddled with cliché. All of this adds up to the modern autistic; a defensive but passionately proud figure, distrusting of authority but in a controlled manner which sparks a revolutionary spirit, not embitterment. Later in the conference, a few delegates recommend Steve Silberman’s Neurotribes to me, which I have read and hold close as something of a bible for the ‘correct’ NT approach to the subject. I’m relieved to hear that it also seems to survive the scrutiny of autistics who mostly approve.

For my part, I’m trying to convince myself that I’m also one of the good guys. One of the NTs who ‘gets it’. I’ve been feeling nagging doubts about my rights, as a non-autistic person, to be writing a novel about a condition which I do not experience first-hand. Like a white person writing from the point-of-view of a black slave, or a heterosexual man writing the narrative of a lesbian woman. I hold on to my connection with my sister, my one autistic figure among the endless crowd, as my personal claim to legitimacy. It will be enough, just about, but even the patience with well-meaning family members is wearing thin among the autistic community. No matter which way this falls, I will join the ranks of the non-autists writing on behalf of the autists, many of whom are perfectly capable of writing their own stories, thank you very much.

Magnetic Structures @ Autscape 2017

Outside the room, colourful magnetic structures hang from the ceiling. Small, silver balls connect struts to create chains holding three-dimensional geometric shapes. One enterprising delegate has created a string all the way from ceiling to floor, an inverted cube spinning at the base. Many of the other shapes spin; some are perfectly symmetrical, others are just random clusters. The materials for construction are on a nearby desk and delegates work solo or in tandem to build more of these temporary artefacts. The affect is simplistic but arresting. I have a little fiddle myself.

Further out into the lobby space, there are complex jigsaws under construction, there’s an impromptu stall of sensory toys — fidget spinners, magnifying glasses, stress balls and so on — and opposite the discussion room a closed door leads to the sacred realm of the ‘sensory room’. This latter is a necessity at Autscape and is a realm which could so easily be replicated in workplaces, schools, hospitals, but rarely is. The NT world too often thinks of autism as an intellectual disorder, which it isn’t, and chooses to forget the very real sensory concerns that many autists have. Ear defenders are the fashion here, as are loose clothing and tinted shades. Autists are by necessity an eclectic bunch, but this only adds to the colour and the pride.

There’s a lot of geekdom here too; Doctor Who t-shirts are a frequent sight. In one corner, a tabletop RPG has emerged and participants giggle and flap their way through a quick fantastical adventure. As a fantasy writer myself, I am heartened by this strong showing of SF. Much of my research, and some of my presentation, concerns the deeply felt connection between autism and various tropes and worlds of sci-fi and fantasy. Long have autists described themselves as feeling like aliens from another planet; a sentiment which brings both lamentations and thrill in equal measure. No-one wears t-shirts of Dustin Hoffmann in Rain Man or merchandise from the Curious Incident of the Dog in the Night-Time live tour. It’s all Trek and Who and Adventure Time and Overwatch. These are true cultures of the autists.

There are more talks to attend and lots of break-out activities. There are craft workshops, dances, meditation, games — there’s even a trip out to go roller-skating. I chuckle as I picture a dry, fusty academic conference, somewhere in a distant city, where NT academics attempt small talk about Derrida around cups of bad coffee and limp sandwiches. I’m suddenly glad to have had the foresight to pack my Nintendo DS, Mario Kart loaded therein.

I make some conversations, but initiation can be difficult. Autistic people do often struggle with social situations, particularly sustained conversations with strangers. Particularly NT strangers. Every delegate wears a lanyard displaying the ‘traffic-light system’ of conversation. Display red and you do not want to be talked to. Yellow and you will talk, but only if you yourself have initiated. Green: I’m keen to talk, please initiate. A final card, white, is neutral. I stick with neutral, although I can often be shy myself and will forever struggle to initiate conversation with strangers. I am the world’s worst networker. I genuinely consider switching to green, but again I’m not keen to impose my NT self too far into the sacred autistic place. Instead, I spend a moment coming to terms with myself: sometimes I’m too shy to talk to people and hey, that’s fine. There is nothing wrong, especially here, about sitting on one’s own reading a book, or Twitter, or racing Yoshi and Bowser through a cartoon pirate ship. Later, when I have been able to make connections, conversation is much easier and I’m thanked, on a couple of occasions, for making the effort.

This is how being in the world of autism makes you think. Reflective and self-aware. But also, if you allow it, ferociously and suddenly conscious of the much larger structures of social construction. Autism, perhaps more singularly than any other disability, highlights the fallacies at the centre of human communication. The airs and graces we put on to send signals to one another, whether spoken or not, are exposed for the degrading and pathetic processes that they really are. Instead, a sort of compassionate knowingness is put in place, a meditative and honest reflection on the subtle differences from human being to human being in the perception of our shared world. ‘Neurodiversity’, a word which belongs at present to the autists and their associates, in its barest form indicates towards the infinite complexity of the human mind which resists all notions of a set, rigid and hence ‘normal’ or ‘correct’ way of being.

But this thinking comes with important modifiers. This way can lead to the casual flippancy of ‘well, we’re all a bit autistic, aren’t we?’. I used to think this myself but no, we’re not, and it is very important that we make that distinction. Autism is a difference. It is, when you consider certain dominant paradigms and the reality of modern life, a disability. A developmental disability is the correct medical term, although I feel this is an inadequate tag given some of the highly developed intellects in the dimly-lit room and beyond. A closer reality is that autism is a societal disability, one which is perhaps more disabled by the constructions of neurotypical society than the other way around. Autists are often seen as closed-in, entrapped figures unable to escape the cage of autism to find meaningful engagement with the world. Less consideration is given to the idea that identity politics and certain societal expectations may in fact be the bars of that cage, not some mysterious malevolent daemon summoned up from science-knows where.

The ‘neutral’ white card which very much makes you doubt yourself…

What can the neurotypical do to strengthen allegiances with autistic people and others of the atypical mindset? Listen, is the first and foremost answer. Listen to autistic people and don’t ever assume that they cannot speak for themselves, because many can. A quick google search for autistic bloggers will plunge you deep into the proof of that. But there are a certain set of ideological tools you could do with packing ahead of the journey. The world of autism is a complex one riven with controversies, contradictions and contests. Here are but a few of the main points of contention:

1. Get yourself straight on the ‘Person first’ argument

The ‘Person First Language’ argument often drives autistics and even the most well-meaning NTs apart. Proponents of PFL will insist that when referring to an autistic person, it is the person who should come first. For example: my sister has autism/my sister is autistic. They say this ensures that the autism and the person are kept separate; that the autism does not entirely define the person who is ranked ahead of the condition, a small victory over disablement. This will often be the stance of the parent.

However, this is vehemently shot down by the autists of Autscape. For these proud autists, their autism is entirely the person that they are and without it, they would not be themselves. If my sister’s autism was magically removed, she would not be the person I grew up with. It would be a kind of murder; a theft of the core component that makes up the mechanics of my sister as a person. Their autism, these people say, is their identity. It is not a disease awaiting a cure, it is a way of life with its own set of strengths and weaknesses. Saying ‘I am a person with autism’ is the same as saying ‘I am a person with Ebola, please help me get rid of it.’ The autists of Autscape, and the legions of proud autists beyond, reject this persistent medicalisation of the condition. There’s even a problem with the word ‘condition’.

I could not agree more. And while desperate parents and carers may feel the need to strive for a firmer grip on the often very difficult situation of raising a child on the spectrum, many need to recognise that it is our society’s inadequate provision for autists that causes the issues, not so much the autism.

2. Abandon the ‘low/high functioning’ dialogue

One of the best talks I witnessed this year, which sparked some of the most thrilling debates, was a discussion over whether the ‘low functioning/high functioning’ labels are useful or not. The consensus seemed to be: absolutely not.

This will be a difficult one to shake as the low/high functioning labels have become pretty bolted down to the lexicon of autism. It gives NTs a way to compartmentalise the experience of others who have autistic friends or relatives. The danger is, saying someone is ‘high functioning’ tends to rob them of some of the needs that person may well have. Sure, they can go to university and live alone, but can they understand a self-service checkout till or summon the courage to get on the bus? Perhaps not.

At the other end of this shaky scale, an autistic person may be declared ‘low functioning’ because of an inability to speak, only to be later revealed as perfectly intellectually capable if the correct method of communication is discovered. In the meantime, that person’s chance at development has been stunted by institutionalisation. For more on this, read the writings of non-verbal autist Amy Sequenzia, or the biographical books of the latest autistic hotshot, Naoki Higashida.

This functioning dichotomy derives from the linear perception of the ‘spectrum’ of autism, a line drawn from high to low on which we are somehow supposed to chart the autistic level of any given person with the condition. But with so many factors to consider (IQ, problem solving, numerical skills, social skills, vocabulary, physical disability etc etc — all complex elements in their own right), placing that X on the line is a near impossibility.

What might replace the ‘spectrum’ and this high/low dichotomy? There has been no clear suggestion yet, not that I know of. I try to avoid making the assumption wherever possible. Whatever the answer, high/low is no longer, and never has been, adequate.

3. Be wary of the male/female balance

A popular theory, which is forever losing ground, suggests that autism affects more males than females, a ratio of 4 to 1. Seems simple enough when presented with apparent diagnostic evidence, but in reality, the assertion seems much shakier. At lunch-time at Autscape I look across the dining room; the gender split seems much closer to 50/50. An unscientific approach of course, but I can’t shake the creeping feeling of obvious logic. Why should autism discriminate between males and females in such a way?

The root cause of autism remains a mystery but genetic factors seem to be the clearest explanation. If this is the case then perhaps, in some way beyond my understanding, autism is attached or associated with the Y chromosome? Evidence of this remains elusive.

What we can say, however, as many female autistic writers are passionately indicating, is that the performance of femininity in our toxically patriarchal culture requires a lot more play-acting, masking and passing than the performance of being male. Now, I’m no gender studies expert, but I can buy into this argument. Being autistic in a non-autistic world requires often desperate levels of self-control and masking in order to ‘pass’ as ‘normal’. Women and girls have an added pressure on top of this and perhaps, therefore, become much better at it.

I heard many women at Autscape talking on this matter and a recurring anecdote was that of the woman in her 40s, 50s, 60s finally getting a diagnosis of autism which explained so much of her life up to that point. Far from a devastation, it came as welcome relief; a new life-line of clarity. There are worries that we are fostering a generation of misdiagnosed women who need the revelation of autism and the support which can come with it. It may be time to abandon this male/female misbalance, or at least admit that it smells a bit off.

4. Make autistic space

Autscape is an imperfect utopia, taking place as it currently does in a conference centre on the outskirts of Northampton. Here, neurotypicality is mostly excluded and autists are free to rearrange space to make it more autism friendly. Hence the traffic-light badges, the dimmed lights, the sensory room. It is imperfect because there are elements of the conference centre which can’t be fixed. The dining room remains bright and clatteringly loud. There’s the threat of a triggering fire alarm at any moment. The food could be… better.

But these are minor quibbles when projected back out to the wider world. We NTs don’t make enough effort to create more autistic space. We don’t do enough to listen and accommodate the needs of autistic employees or students or colleagues. We don’t have sensory rooms, we don’t allow fidget spinners in class rooms, we view flapping, wailing, stimming as weirdnesses that need to be quashed or laughed at. Instead, we need to embrace adjustments and shed our anxieties over neuro-oddities. Our world is richer with strangeness nestled safely within it.

5. Drop medical language

Don’t call autism a disease. Don’t dream for a cure. Don’t talk of therapies or symptoms. De-pathologize language. In doing so, abandon too the idea that there is one ‘healthy’ way for a mind to be, a normalcy to which we all ought to strive, or already have.

The history of autism is one of dangerous assumptions made by medical professionals and then subsumed into society and culture in a paradigm of pathology. Emerging from this have been so-called ‘remarkable’ autistic individuals who have defied medical expectation and gone on to do brilliant things, despite their autism. These people may counter: the brilliant things were in fact because of the autism.

Perhaps if we lessen our instinct to pathologize autism we will, in turn, tear down the walls we’ve thrown up which block autistic individuals unnecessarily. How many brilliant minds have been cast into cells and locked away simply because a person preferred to flap their hands rather than play with dolls?

For more on this, the touchstone article is Nick Walker’s ‘Throw Away the Master’s Tools: Liberating Ourselves from the Pathology Paradigm.

Autistic Art Activism: a crafty feminist t-shirt workshop, facilitated by Annette Foster

The biggest takeaway from Autscape however, is this: Don’t pretend to know how it feels to be autistic, listen to those who experience it first-hand. I have to believe that NTs can write about autism (my PhD kind of depends on it), but I do think it’s possible. But the biggest and most common mistake on the part of creative NTs is lazy assumption.

On the train home, I checked in on the #ActuallyAutistic hashtag and found that it had spawned a sibling of its own: #ActuallyAtypical. The first episode of the Netflix comedy-drama Atypical had just landed and reactions were split. Neurotypical commentators were applauding this bold and exciting approach to autism: an honest programme which makes a hero of an atypical mind and examines an under-explored area of autistic experience; sex and relationships.

But the actually autistic were sorely disappointed. They saw cliché, misrepresentation, even offense. The humour of Atypical is directed almost entirely at autism and there seems to have been little to no effort to consult actually autistic people about their experiences in this area. Ever the dutiful researcher, I settled in to watch the first episode and yep, it’s bad. The various clichés are all present and correct. The main character is white, male and middle class, weird but with an excellent memory for useless info. His mother is stressy and unlikable. He has a moody sister, protective but prone to teenage angst. The dad is distant and helpless. This picture of the ‘autism family’ is fast becoming the hot new cliché and is offensive to just about everyone involved. Not all mothers are overbearingly protective. Not all siblings feel left out. Not all dads are uncomfortably out of their depth. It certainly wasn’t the experience of my family.

And, at times, it is uncomfortable to watch. There’s a moment when autistic Sam has been (somewhat inexplicably and unconvincingly) invited to have sex with the girl he’s (somewhat inexplicably and unconvincingly) managed to date. She takes her top off, starts stroking him gently on the arm and his desperate reaction to this sensation which he doesn’t like is to shove her to the floor. There’s a nasty taste of sexual violence suddenly in the air, an accidental abuse which doesn’t seem to know if it wants to be tragic or funny. She jumps up, shouts ‘are you a retard?’ and throws him out.

The ‘R’ word is pointedly used but I screamed at the screen. How could this NT character, who has just been on the world’s most awkward date, not recognise that Sam was autistic? It was screamingly obvious. These dramas (see also the BBC Drama The A Word for this) seem to exist in a world where autism is still a hush-hush secret and not a commonly known condition. And so, instead of reflecting on a society which contains autism and could do better with it, the focus is turned back on autism itself which it continues to frame with a perverse voyeurism and a patronising humour. Once again, we NTs just get away with it, because it is glossed as informative and important. In reality, it is dismissive and poisonous. But I’m just one NT writer with a small connection to autism. For a proper drumming of Atypical read this article by autistic writer Sarah Kurchak.

Finding a Better Approach to Autism Fiction — my presentation at Autscape 2017

Thankfully, my talk at Autscape went well. I raised a few laughs, sparked a vibrant Q&A and my conclusion was met with excited hand flapping. I wasn’t the complete golden boy — apparently, I had talked a little fast for some — but, on the whole, I’d done well. I had taken an approach of openness and honesty, knowing from my research that autistic people have long been faced with dishonesty and dismissal. Thinking of autism as a ‘locked-in’, inward-looking condition, only encourages neurotypicals to assume that there’s no chance of reaching the lost person beyond. In reality, it is quite the opposite. Instead, thinking autistically leads to a meditative self-reflexivity where the masonry of the walls of identity can be examined and, if given the space and time, patiently eroded and remodeled. There is, in this, a certain ‘coming-to-terms’ with oneself which I had experienced in a very small way when I considered my own levels of shyness. In some ways, I had known this already — perhaps my sister had led me there all those years ago — and had therefore taken the right approach with my talk: unguarded, clear, exposed, honest, non-patronising. I only hope now that I can take this impulse forward in the rest of the writing of the unfinished drafts. I’m still a long way from finishing the book, but the flappy approval of this most thoughtful and illuminating bunch of people was the most heartening motivation I could ask for.

Not long after my talk, Autscape was done for another year. The spinning magnet structures had been spirited away and exhausted friends held each other deeply in long farewell embraces. Organizational focus turned to shuttle bus and taxi arrangements and the dispensing of packed lunches. I pushed through the final vestiges of shyness to say a few heartfelt goodbyes to some individuals who I hope to continue a professional relationship with. Then I stole away into the Northampton sunshine and walked to the train. My head buzzed with the words of this article all the way home. There was the shimmer, the spin, of something quietly revolutionary in that stale conference centre air.

The Autscape Logo

Autscape arose out of the frustration of NT-led conferences not making the space and accommodation for the very people the events hinged up. As such, this annual event has now become a safe-haven for a burgeoning community who emerge in this present moment, blinking into the soft lighting, with a reconfigured appreciation of their own place within the fabric of humanity. They share quilts with oppressed groups before them, particularly the queer movement, and are fusing thrilling bonds which may lead to a form of neuro-revolution.

It is, I think, something our society desperately needs. Persistent mental-health crises, particularly in the young, coupled with frightening rises in inflexible world-views, are throbbing boils which are in obvious need of lancing. The autists and their kin may be the ones to lead this charge after quietly suffering in the background of neurotypicality for so long, a silenced minority who are only just starting to push out their voices.

For NTs, there is much to be learned from those who have already embraced the diversity of the human mind. I understood some of the early stages of this through my sister way back in my formative years, but my comfortable slippage into the world adulthood neurotypicality means I still have far to go. But the first lesson for NTs, I think, is this: de-centre from typicality and the tendency to keep a narrow vision. Doing so encourages a certain flexibility of mind. It must be kept flexible. Kept open. Societal and academic structures which promote and impose a certain closure of thinking must be resisted and ignored. Not doing so encourages an entrenchment of defensiveness which throws up firewalls between archaic theses and the freshness of the actually autistic experience.

So to my fellow NTs, I shyly say this: recognise the clichés of autism then resist them. Question your questioning of strangeness, embrace it instead. And never treat knowledge as infallible; let it teeter, aware of its own fragility, and then allow others, who think differently, to add more magnets to your knowledge. They will strengthen it, neaten it, and keep it spinning.

Baby me and my autistic sister

***UPDATE*** 23/09/17 - The original post didn’t properly credit the creator of the cape in the top image, or the t-shirt in the middle. These were created via the brilliance of autistic advocate, PhD researcher and performance artist Annette Foster. Find out more about Annette here: http://nettypage.com/. I gather she is doing some vital work in the area of autism and womanhood through visual art and live performance. She’s also damn good at teaching people how to make t-shirts!

David Hartley is a writer and performer based in Manchester. His fiction has appeared in Ambit, Black Static, Structo and numerous other places. His flash fiction collection Spiderseed was published by Sleepy House Press in 2016 and very nearly won a Saboteur Award. He tweets at @DHartleyWriter

His PhD study at The University of Manchester concerns representations of autism in sci-fi and fantasy. For more on this project, follow @Fantastic_Aut on Twitter and YouTube.

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David Hartley

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Writer and researcher. Author of Spiderseed (Sleepy House Press, 2016). Interested in autism, animals, SF&F, spoken word, veganism. Tweets @DHartleyWriter

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