Over the past few months I’ve been reading and re-reading Melanie Yergeau’s “Authoring Autism“. It’s a brilliant book (to say the least) that has really helped me progress in my understanding of autism’s and autistic people’s placement and treatment in society. It has inspired me to write this blog post about some of the ways in which autism is misunderstood by nonautistic society and how autistics are seeking to counter problematic mainstream framings. I used some thoughts from the book as a starting point and ultimately the post ended up going in a few random and different directions according to how my thoughts flowed.
Themes I touch on include: diagnosis, disclosure, how autism is misunderstood, redefining autism, passing, functioning, ABA, ableism and, of course, the importance of autistic voice. Sometimes I am addressing a neurotypical reader, sometimes an autistic one – I hope it is clear which one at what time. I’d love to hear any feedback you may have in the comments.
Note: Melanie Yergeau also has a couple of interesting videos up on YouTube (e.g. this one on “Shiny Identities“) and I thought I would also try to make my own video based on some of the text in this post. I will link to it here once it’s finally done. I’d like to say a big thank you to Melanie (should she ever find this) and recommend that everyone pick up her book!
Autism remains critically misunderstood. They say that we are deficient, defective and disordered. That our brains and bodies are broken and dysfunctional, diseased even. We have missing Theory of Mind (ToM) modules or broken mirror neurons. We cannot comprehend and empathise with – or perhaps even apprehend the existence of – other minds.
We are cast as decidedly “less than”. Less than fully aware (of both ourselves and others), less than comprehending, less than empathetic, less than communicative, less than intentional, less than living, less than fully human. In the collective imagination, we are pictured as empty lifeless shells, our innards bombarded by and exploding outwards as symptomatological cluster f*cks: defecits in social-emotional reciprocity, impairments in social imagination, stereotyped and repetitive movements, bizarre meaningless behaviours, narrow, restricted and ultimately uninteresting interests…
This “lacklustre lack list” (as Melanie Yergeau puts it) is permanently pinned to the autistic bodymind, ultimately serving to degrade our humanity. We are storied and treated as though we are rhetorically halved – demi-rhetorical in fact – and hence effectively rhetorically (and sometimes materially ) negated and erased. We do not function as fully human – at least not compared to the fully functioning neurologically typical (who presumably function so well that they lie above and beyond any “functioning” measure or spectrum). Being “less than”, we are diminished to a state of virtual non-existence, a sort of “lifeless living” that is worse than death.
Of course, they, the so-called “experts”, have us wrong. Autism “experts” have misunderstood us, the autistic (the real experts), in critical and (to us at least) all too obvious ways. Perhaps this is because they have not been listening to our voices.
What about Autism Speaks? Do they not stand up for autism/autistics? Not quite… In fact, they achieve the very opposite through attempting to stand above, over and in for us. Autism Speaks (aka nonautism) speaks over autistics. The reality is that “autism” does not speak. Rather, NTs speak for autism. But autistics certainly do speak. “Nothing about us, without us”, we say. We are speaking, but are they listening?
And, in case you were wondering, we are in fact a “we”. We are an “us”. Not a “culture of one”. Nor can we be divided. We cannot be categorised and separated into “this” and “that”, “these others” and “those others”, however much you may want to force us into neat yet distanced and limiting containers. We are not “high functioning” or “low functioning”, “mild” or “severe”. We are all autistic. Autistic equals. All equally valuable autistics. Fully autistic and human and equal. Equals with each other, and equals with you. All of us.
We are not “less than”. We are, in fact, “equal to”. This fact might seem like stating the blindingly obvious (I hope). And yet, we live in a world where such sentiments about equality are still commonly denied (even if only implicitly), where they need to be stated, repeated and advocated for continuously.
What’s more, we are quite often “more than”. We certainly sense and perceive more. We may move more. We very often feel more. We may think a whole lot more as well.
We may not share quite as much, at least not in ways that others may readily understand. But this does not mean that our internal life is not “equal to”. In fact, it is probably in many ways “more than”, and this itself is very often the source of our so-called problems. Too many sensations, too many movements, too many emotions, too many thoughts.
If you listen and watch carefully, you will start to notice how we are in continuous interaction with our environment. We are not shut off and out. Impervious to the outside world. Trapped inside the autos of autism. It is the very opposite. We receive and process the world at a more intense level. We end up with a lot more of the outside in our inside. We are skinless, shell-less, boundary-less. It is you, the NTs, with the skins and the shells, the filters and the barriers, the immunity to much of the outside.
We autistics may close off, cover up, withdraw, shut down, meltdown, and more, but this is because we need to self-protect. There may be too much noise, too much light, too much movement, too much blah blah. Too much. But ultimately, the way we are is adaptive, it is logical and it serves a purpose. It is not random or meaningless. It it essential to our beingness. It is autistic. It is also very human. Autistic humans. Human autistics. One and the same.
Autistic traits are not only, or even mainly, negative. Autism does not equal “challenging behaviour”. Autism and autistic behaviour are not one and the same thing. Autistic behaviour stems from autism, certainly. But it is mediated by a hugely crucial factor: the environment. Provide us with the right environment and it can make all the difference to us, and to you. The positives will come to light. We will flourish. We will still be autistic, just as autistic as ever. But we will have less negativity in our lives, and hence less problematic behaviour, just as would be the case for anyone. Autistic “challenging behaviour” is not autism, it should not be taken for-granted as such. Nor is it meaningless. Behaviour is communciation. We are trying to tell you there is a problem. Help us to address it if you can and you will see.
We resonate and merge with, in both the social and non-social worlds. We are less discriminatory in our sensory filtering, so all the stimuli impact us deeply. We see beauty others miss. We may be profoundly affected by emotions others skip over. We echo, stim, repeat, perseverate. We crip, queer, invent and involute. We self-diagnose and disclose, narrate and rhetoricise. Whether verbally or not, whether intentionally or not. We embrace meaning, we are full of it, yet we can also reject it (whether meaningfully or not) and venture beyond, expanding the realm of the rhetorical.
All of this might sound a bit weird. A bit paradoxical. Perhaps this is because of the misunderstandings that abound. After all, the world is not used to thinking about autism positively, critically, queerly, or indeed autistically.
“What exactly is autism anyway?” you may be asking by this point. Hmmm, let’s see… defecits in social communication and repetitive, rigid, blah blah, bleurgh… Down with the DSM. Dump it. Down the drain it goes. Woosh!
Want real insight? Want autism at its essence and in all its diversity? Listen to autistics. We will tell you…
You see, our sensory perceptions are quite intense. We are strongly affected by everything around us. This is because we have an especially high information processing sensitivity. So what, you say? Well, this affects our visceral state which affects how we move (or don’t move, as the case may be). Social communication is all about movement after all – the muscles involved in speech production, facial expressions, gestures, posture, regulating eye gaze and even in controlling muscles in the inner ear that help regulate what we hear. Our intense sensory perceptions affect our information processing, affects our visercal state and our movements, affects our communication and behaviour.
Surely this is a more logical way to think about autism. More logical than “autistics lack ToM because they are autistic and… autistics are oblivious to other minds?” Why do we lack ToM, ToM theorists? ToM is not the be all and end all. It is not situated at the core of everything, or anything for that matter. What about our senses, perceptions, physiology and motor movements? These lie at the heart of us, of every person. Maybe our reality is a bit different to yours? Surely you can use your fully functional and superior ToM to comprehend this. Our sensory perceptual reality is different. Our information processing and cognitive styles are different. ToM results from this, it is a secondary outcome. Perhaps, then, we simply have a different ToM as a result. Autistic theory of mind. Maybe we should be asking “theory of whose mind?”
Ultimately, autism pervades (that much you have right). It affects every aspect of our existence. Autism is all of us. Not just one part of us. Nor, god forbid, a separate entity entirely that has tragically latched onto an otherwise “normal” person. Autism + person are inseparable, hence we have “autistic person”, not person with (separable and – we hope – potentially detachable) entity of “autism”. You don’t want to define someone by their autism. News flash: Autism does define us. It isn’t the sum of everything we are; we have just as many multiple identities as anyone else. But it can’t be separated from any part of us either. Just as your neurotypical status is inseparable from you.
I had – and still have – difficulty speaking with people. I didn’t know why at the time. I thought it might be my fault (“my brain is working too slowly to keep up”). I thought it might be their fault (“why are they doing everything so fast?”). I was isolated from my peers. I isolated myself. I didn’t know why. Oddly perhaps, I don’t remember feeling unhappy about this. I was close with my family and that was enough. I hyperfocused and found purpose in my studies and interests. I didn’t really feel much about it. Perhaps because I didn’t let myself feel. Now, though, I feel it more. Perhaps that’s because now I know why. It feels safer and more acceptable to let myself feel it. It’s nobody’s “fault” after all, least of all mine. Is there even anything “faulty” at all? Lacking the knowledge I was autistic perhaps, the lack of self-understanding, the lack of access to autistic community, but not my autism itself.
Eventually, I underwent diagnostic assessment for “Autism Spectrum Disorder” / “Asperger’s Syndrome”. “Why the disorder?”, “Why the syndrome?”, I thought silently. Why am I being directed to and through mental health services? I am not mentally ill. Why am I having to refer to the DSM, a manual of mental disorders? “Don’t worry, it’s not a disease” the psychiatrist informed me after he made the diagnosis. “Well that’s comforting”, I thought. Now I know people out there think autism is a disease… nice.
I wanted and needed a diagnosis to confirm my newly found identity, to validate and even to liberate my very self. Unfortunately, such a procedure involves subjecting oneself to a heavily pathologised medical model of autism that lays out pretty much every aspect of autistic beingness in terms of a checklist of supposed deficits, dysfunctions and failings. Just what I needed!
Yet diagnosis is important. Really, though, it should be less about medical professionals and their checklists and more about self-identification and self-acceptance. Ideally, the post-diagnostic journey should signal a shift well away from and beyond the pathology paradigm. A bucket load of thoughts and emotions are unleashed that require processing. I embarked on a journey that led towards acceptance and increasingly towards pride and advocacy. I am still on this journey, and probably always will be. It can sometimes be a tricky road to travel, yet hugely necessary and rewarding at the same time.
Self-acceptance involves looking at the dominant view of autism (and the forces that create and reproduce this dominant view) with a critical eye. It means reframing what society thinks it knows about autism – what we are told by professionals, parents, charities, media and broader publics – and recasting these messages in a more accurate (not to mention empathetic) light. It means adopting a different starting point, one that stems from our own lived experience and from the perspectives of other actually autistic people, us, the real experts, the ones who should be shaping the narrative from the get-go. Many of us are trying very hard to do this – whether through small actions that impact on those around us, or through larger-scale advocacy – but we are rarely listened to as a priority.
I needed permission to be, to be my (autistic) self, whatever this might be. Self diagnosis + official confirmation provided me with this permission. Yet somehow I still needed more. It was not quite enough. I still felt some shame, the sense that something was “wrong” with me. I felt a pressure to change, rather than to simply be. I thought I ought to try to “better approximate the rhetorical trappings of the neurologically typical” as Melanie Yergeau puts it (see p.116 of Authoring Autism). Perhaps this is unsurprising given the existence, persistence and escalation of therapies that are explicitly designed to change us, to convert autism to nonautism – always the preferred option. ABA, social skills curricula, special ed programs, and worse (e.g. biomedical treatments), are all designed to change some core aspect of who we are, conveying to ourselves and to the world that there is something amiss here, something broken and in need of fixing by those who know best.
Diagnosis often paves the way for intervention, especially where children are concerned (autistic adults, meanwhile, are usually simply swept aside). Early intervention is where it is at. Intervention designed to build and shape a more suitably neurotypical person out of the raw materials of the empty ToM-less shell that is the autistic. This is not the road to acceptance and understanding, or even to conventional notions of “success”. Of course, we are told otherwise. We are told “it is for your own good” and “you will thank us later”. We will be happpier this way, if/when we can change. We will be closer to, even indistinguishable (*fingers crossed*) from our peers, closer to the norm, so of course we will be happier – who could question such a thing?
Happier? Surely they don’t mean this? Perhaps they mean that they will be happier when we are more “normal”. But they are conflating us and them – such brilliant ToM. Perhaps they mean we will become more “high functioning”? But whose “functioning” are we talking about? And “functioning” at what cost? The reality of “passing” for many autistics is one of loss of self, of intense fatigue, mental ill health and ultimately burnout, possibly worse. Passing is the masking of autism, and so of self. ABA is the masking of autism, and so of self. Intervention is not about the curing, or even the changing, of autism. This is because autism itself cannot be made to disappear (this, at least, behaviourists appear to understand). It is about the covering of autism. The plastering over of an authentic autistic self with a surface level, plasticky, socially acceptable facade. So shiny on the outside, yet so suffocating from the inside.
Autism belongs to the autistic, and so autism is in need of being reclaimed. What does it mean to be autistic? We need to redefine, reinvent and own the answers to this question.
What might our challenge involve? It might mean casting light on nonautism and on ableism. It might mean the questioning of what are decidedly allistic constructions of sociality and successful rhetorical exchange, and of the privileging of sociality itself (see Authoring Autism, p.197).
Where does the solution lie? Cure autism? Or cure ableism? Ignore and actively supress autistic voices? Or challenge the hegemony of narrow neuro normative narratives?
I think it starts with our own selves. We need to feel proud and accepting of our autistic selves. Do we feel able and safe to sport autistic flares publically with pride? Should we? Will people notice, care or comment on these flares? Will they elicit questioning, even denials of our diagnostic status and autistic disclosures?
Autistic pride badges, and disclosure more generally, are potentially powerful (though admittedly sometimes unsafe) things. They are the opposite of hiding. Hiding signals shame and/or oppression, whilst openness signals pride and/or safety. It often requires a certain amount of privilege to be able to publicly disclose an autism diagnosis. This is a sad fact, one that needs changing. Autistics who are able to disclose safely should consider exercising this privilege. Being openly and proudly autistic is an important means towards changing societal perceptions about autism and towards increasing the number of autistics who are able to identify both to themselves and to the world.
In her blog, “Autistext”, Melanie Yergeau writes, “when socialising through speech, I will almost always be awkward” (link to post here). Thinking about and repeating such a refrain in my head (a phenomenon known as echologia) makes me feel good. Why? Because it relieves a sense of shame and a need to hide. It demonstrates that the shame attached to such things as awkwardness is far worse than the actual thing itself (which isn’t really that bad, not bad at all). Melanie is admitting to such shameful/not actually shameful things. Moreover, she is accepting of it, going on to say “I am OK with that awkwardness” and that, in fact, she is learning to embrace, reclaim and redefine that awkwardness.
In so doing she is not only helping herself towards self-acceptance and pride. She, and others like her, are posing a challenge to the rigid norms and ideals that govern society, sociability and notions of what it means to be a fully rhetorical and valuable human being. Stigma and shame are the problems, not autism. It is ableist narratives that need to be fought against, not autism. We need to reclaim and redefine our autistic awkwardness. Is it even awkward (to ourselves, to other autistics) at all? This can only start with and from within ourselves, and expand through coming together as an autistic community.
Autistic people. Autistic humans.
Autistic commonplaces. Austitic community.
Autistic invention. Autistic involution.
Autistic culture. Autistic pride.
Autistic rights. Autistic advocacy.
Autistic rhetoric. Autistic authorship.
AUTISTIC VOICE. AUTISTIC SPEAKS.