Saturday, December 22, 2018

Neurotribes and Authoring Autism - Part 2

Neuroqueer (n): an individual whose identity has in some way been shaped by their engagement in practices of neuroqueering
Neurotypical (n): a label for people who are non-autistic


In the second of this two-part blog post series about texts on autism, I explore the contours and concepts on offer in Melanie Yergeau's "Authoring Autism". But rather than offering an analytical reading, I have decided to let it speak for itself as much as possible. It is, after all, a text about authoring an identity, and who am I to add another layer to its language? It is full of quotable passages, and my main effort has been to capture essential ideas and serve them up as directly as possible.


Melanie Yergeau's "Authoring Autism" is a text about autism that is simultaneously a queering of autism. If we think of autism as a diagnostic that was historically bestowed on the autistic subject from outside the subject, i.e. by the medical establishment, then authoring autism is a way of queering, of interacting with, of reclaiming as well as dismissing, autism by and for autists.

In stark contrast to "Neurotribes", which introduces autism in a way that is accessibly neurotypical, Yergeau's text is dense and more divergent. It is a challenging text defiantly centred in the writing of autistic practice.

The Legacy of Lovaas

If there is one subject that comes in for special and repeated criticism, it is the legacy of behaviourism in autism, and particularly the form pioneered by Ole Ivar Lovaas. He comes in for plenty of flack from Steve Silberman in "Neurotribes", but Melanie Yergeau takes it to a whole different level. That's because this time it's personal.

The author's own experiences of suffering as an autistic in society inform her critique, and no one is immune from criticism. She is not afraid to take on hallowed ideas and characters, even taking aim at the widely adulated Temple Grandin:

"Temple Grandin's routine proclamations that autism teachers should emulate the social practices of the 1950s is not a socially just nor revolutionary approach to neuroqueer sociality, but a demonstrably racialized orientation toward the world. Such autism awareness is better termed perilous than it is positive or gainful."

Grandin's mother also comes in for criticism for writing an alarmist piece that associates autists with child pornography:

"In 2013, Temple Grandin’s mother, Eustacia Cutler, wrote a horrific article for the Daily Beast in which she (quite unempirically and egregiously) warned that autistic men are potential child pornographers lying in wait"

These admonishings are necessary. Temple Grandin may be a hero to many, but her theoretical musings about autistic education do not fit well with progress made in identity politics during the early part of the 21st century.

Having established her willingness to take on all comers, Yergeau reserves the full force of her ire for Lovaas and his legacy of behavioural therapies, which includes the Applied Behaviour Analysis (ABA) offered by Autism Speaks. She introduces its purpose thus:

"To put it briefly, ABA represents a suite of therapeutic modalities whose end goal involves behavioral shaping toward the normative, toward the prosocial, toward compliance"

Applied Behaviour Analysis (ABA) isn't offering value in itself, because the potential it offers is mere "'cosmetic potential' ... in which behaviors are re/directed for 'being more socially acceptable than the behaviors they replace.'". Cosmetic is also masking:

"Recovery, then, is not the process of becoming straight or cisgender or nondisabled, but is rather the process of faking the becoming of normativity". 
If we consider the adage "fake it till you make it", we may consider the difference. Making 'it', in the case of ABA, is an endpoint at odds with the true potential of an autist.

In any case, the point could not be clearer. Behavioural recovery is not true recovery, it is superficial, serving the needs of allistics rather than autists.

The Curse of Zeno

Yergeau's thesis highlights the way in which autistic disability fulfills a rhetoric in which autists are prevented from participating in the world, fixing them to their designated disability like butterflies pinned to a wheel. She invokes the concept of a demi-rhetor, which can be seen as a type of logic that resembles Zeno's paradoxes: the bearer must accomplish an infinite number of moves before reaching a certain destination. Or to put it differently, the bearer will never reach her destination. Yergeau sees clinicians as using this type of logic to undermine autistic agency:

"As a construct, demi-rhetoricity enables clinicians to claim the best of both worlds when they respond to autistic rhetors: 
1. They can argue that autistic people are not autistic enough to make claims about autism.
2. They can likewise argue that autistic people are too autistic to make claims about autism. 
While demi-rhetoricity often renders its subjects effectively non-rhetorical, its construction as a kind of rhetorical residue fosters the illusion that the demi-rhetorical are (or can aspire to be) participating bodies."

The implication of this criticism is one that would have confounded Lovaas, whose primary concern was to make autistic children appear non-autistic. However, he didn't see autism as a positive identity, but merely as a lack, as a disability.


Yergeau is making it clear from the outset that those who have dominated the conversation around autism for the longest time have almost always been non-autistic. It is time to reclaim autism by and for autists.

The establishment has used autism as a route to its proper destination, namely queerness, and Yergeau sees strong links to the mid century gay panic.  She sets out to analyse and deconstruct this harmful rhetoric, and asserts the activity of queering as a positive activity in which autistic subjects engage:

"This project, at root, aims to deconstruct cognitive studies scholarship that reifies the inhumanity and neurological passivity of autistics, while also claiming that autistic people queer the lines of rhetoric, humanity, and agency"

By being engaged in an activity of queering the existing field, which came into existence via rhetorical work done by clinicians and nonautistics (whom she variously calls allists or neurotypical), Yergeau is opening a space in which autists can be fully rhetorical without having to be rhetorical in a way that neurotypical people may necessarily be comfortable with.

"If clinical discourse on autism is, as Duffy and Dorner declare, storied around rhetorics of 'scientific sadness,' then autistic rhetorics, in all of their contrastive resonances, queer the motifs, structures, modes, and commonplaces of what nonautistics have come to narrate and thereby know about autism. To author autistically is to author queerly and contrarily." 

Rhetoric and Agency

She contends that the involuntarity ascribed to autists' actions (eg. stimming) is a way of saying that autists do not have access to and cannot participate in rhetoric. This assumption marginalises those pinned to demi-rhetorical autism:

"involuntarity’s stories are those of abuse, of disbelief, of suffering and non-agency and pain. Involuntarity is forcibly imposed onto autistic bodies [..] Involuntarity is a project of dehumanization"

Rhetoric, as a fundamental socialising activity in which humans participate, is something autists are by that very token excluded from:

"Nowhere is the syllogism clearer:
—One must be human in order to be rhetorical.
—Autistic people are not rhetorical.
—Autistic people are not human."

This double whammy of denying humanity and agency in the same clinical move is a theme Yergeau develops and counters throughout:

"the following remains my chief concern: the ways in which non-rhetoricity denies autistic people not only agency, but their very humanity"

As an antidote she proposes a positive definition of autism, as an embodied neuroqueering that strives towards entelechies, which is to say multiply divergent futures that do not follow a linear trajectory and are neither located at nor aiming at a singular point, but are instead embodied through a striving towards in "verbed forms" of "cunning movements" that demi-rhetorically subvert normal socialised rhetoric:

"queering ... 'confronts all of us with the incommensurabilities of desires and identities and socialities.' [...] To be autistic is to be neuroqueer, and to be neuroqueer is to be idealizing, desiring, sidling [...] a neurologically queer motioning that is asocially perverse, a lurching toward a future that imagines 'incommensurabilities of desires and identities and socialities,' a ticcing toward rhetorical residues [...] Autism is my rhetoric."

The strength of Yergeau's position emerges from seizing the allistic blindspot, the in-between where autistics supposedly lack intention, social rhetoric, and agency:

"Autistic people persist and insist in the narrativity of their tics, their stims, their echoed words and phrases, their relations [...] Autistic stories are interrelational, even if that interrelationality does not extend toward allists, or even humans more generally" 

In setting things up in this way, Yergeau does not opt for a neat and easy delineation, and acknowledges the complexity of this tapestry identity:

"these rhetorical webs of autism and queerness are not just notable for their horrors. They invoke all of the tough, meaty questions that any kind of intersectionality demands. How do we account for where queerness begins and disability ends? It may well be that I am queer only because my neurological disability predisposes me to queerness. But does that matter? What are the consequences of saying that I’m queer because I’m autistic—or, conversely, that I’m autistic because I’m queer?"

The task may be daunting, but as an autist the author brings the weight of her being to bear and  asserts her identity by writing it:

"For my part, I want a rhetoric that tics, a rhetoric that stims, a rhetoric that faux pas, a rhetoric that averts eye contact, a rhetoric that lobs theories about ToM [Theory of Mind] against the wall"

The Blessings of Demi-Rhetoricism

One of the keys that unlocks the power of this identity and reclaims autism lies are the queer concepts of demisexuality and demigenderednes:

"I suggest that demi-rhetoricity holds potential as a reclamatory strategy for those who publicly disclose an autistic identity. Rather than conceptualize identity or rhetoricity as points along a linear spectrum, deminess might instead be queerly viewed [as] about rhetorical attraction or rhetorical desire, and what it means to roll, crip-queerly, outside the bounds of rhetoric"

Rhetoric is a central concept to dismantle because of its close links to other more visible traits that autists supposedly lack. In other words, it is a kind of latent variable in this web of neurotypical assumptions:

"Rhetoric’s topographies shore up that which autistics are time and again claimed to lack: intentionality, symbolic capacity, sociality, and audience awareness, among other rhetorical means"

Rhetoric's links to the social is reinforced again and again: "rhetoric is firmly situated in the 'realm of the social'", "intentionality only becomes rhetorical when it is social", and "intention requires a theory of one’s own as well as other minds".

Yergeau frequently brings up allistics' preoccupation with the social, and their "assumption that allos and autos are binaristic poles, blips on a continuum that speak toward the autistic’s lack of sociality and thereby moral degradation". This is closely related to "rhetoric’s privileging of linear or developmental trajectories, of a social symbolic, and of normatively brained means and motives."

In this regard even Lorna Wing, one of the originators of autism as a spectrum, comes in for criticism:

"If rhetoric is the stuff of tricks and lies, then the unimaginative autist must surely not be the stuff of rhetoric. Indeed, in Lorna Wing’s original triad of impairments, impoverished imagination occupied its own specific domain, broadly encompassing pretense, play, and deception, as well as the ability to think about and predict the actions of others — all necessary preconditions for traditional conceptions of rhetorical manipulation."

The tripartite of "social, communicative, and motoric domains" are "god terms that unite this triad of impairments" and "overwhelmingly concern themselves with sociality and ToM [Theory of Mind]".

Yergeau's concern lies with the real psychological effects of diagnosis, not with the doors it might open with regards to educational assistance:

"Symptoms and test results might indeed represent only a portion of being human, but their rhetorical effects are essentializing"

She makes a similar point later:

"More people are becoming autistic; more people are becoming nonpeople. And so, what does fuck you look like on the part of nonpersons?"

In Kenneth Burke she finds a singular purveyor of the contrasting duality of, on the one hand, rhetorical sociality, and on the other, arhetorical less-than-human autism:

"Burke laments the ocular, arrhythmic style of mathematicians, visual thinkers, and hyperlexics, placing them in direct opposition to the psychogenic symbolic. Although he does not name autism in these examples, he does describe what resembles stereotypes of autistic perception—disconnection from the human and the rhetorical body."

A concept that Yergeau uses to stand this on its head is entelechy, usually seen as the "final destination" of some potential (comparisons with Hegel's Spirit as teleology is interesting but out of scope here).

"Building upon Aristotle, Burke described entelechy as the 'temporizing of essence.' Unlike Aristotle, Burke’s concern wasn’t with the innatism of biology, but rather how narrative comes to be understood, determined, or essentialized. In this way, entelechy is circumscribed in a narrative’s ending: how a story is fulfilled"

In other words, it has a single destination. Instead, following Byron Hawk she she sees the neuroqueering of rhetoric following a multiple and divergent entelechy:

"'Entelechy becomes not the striving for a single, predetermined goal but the striving itself that generates multiple lines of divergence as a residual effect.' Hawk’s embrace of motion rather than end point is intrinsic to the neuroqueering of rhetoric"

The link to queering and the subverting of the normal is later reaffirmed:

"These multiple paths of flight, to channel Hawk, are not equivalent or stationary, but are rather always-unfoldings of rhetoricities that frustrate norms"

Yet in contrast to "rhetorical impulses [that] are often imperialist impulses—whitening, converting, persuading, assimilating", autistic rhetoric is partial, often involuntary - yet no less rhetorical. "Symbolicity may be rhetoricity, but rhetoric is not constrained to the symbolic" (my emphasis):

"Rhetoric is not always narrated, despite narration always being rhetorical: the New York Times best-selling autie-biography is as much a font of rhetoricity as is the autistic child headbanging in a clinic. There might or might not be meaning; there might or might not be symbolic linguistic formation or representational intent; but there are rhetorical effects, there is invention at work, there is rhetoricity."

Yergeau wants to ensure that the reader understands that an autist can be rhetorical even if such rhetoric results from "involuntary" actions.

What emerges is a far more nuanced picture of rhetoric than Burke, or indeed much of mainstream prosocial narration, can afford. Yet in spite of the pain and suffering that autists experience at the hands (the "closed fists") of prosocial rhetoric, a richness of alternative communication and meaning begins to surface, a demi-rhetoric in which autists are the authors.

The Allistic Project Exposed

Autism studies take inspiration from crip and disability studies. For example Fiona Kumari Campbell calls for "an antisocial turn, a politics that refuses respectability", which stands in stark contrast to the demands of for example ABA, in which prosocial behaviour is the goal.

Yergeau also draws attention to gender differences in diagnosis:

"Autism researchers continually debate whether autism’s gendered ratios—ranging from 4:1 to 10:1 male-to-female—are a matter of biology or phallocentric and ciscentric conceptions of developmental disability."

She favours the view of Elaine Day, who points out that girls are taught from a young age to behave more socially, and are therefore able to mask there autism better.

"As autie-biographer Elaine Day describes, 'Social reciprocity, eye contact, and even mannerisms are actually physically taught to us from an early age in an attempt to make sure that we develop into appropriately mannered young women, and the simple fact is that it can make diagnosing AS [Asperger Syndrome] at a young age almost impossible'"

She associates ABA's practices with a variety of paternalistic and political strategies to expose the allistic ideology. First up is the language of surveillance:

"The rhetorical training of ABA might be best understood as a kind of 'we are always watching you.'"

Next is the language of governance and manipulation:

"What practitioners trip over themselves to call a 'science of learning' is in fact a science of regulation and social control"

Then the language of erasure:

"ABA doesn’t remove the neuroqueer — it overwrites it"

And then the language of disability, and keeping disabled:

"Rhetoricity cannot be fully realized in neuroqueer subjects, for neuroqueerness resides. The brain’s capacity for trainability—more plastic and malleable in children, but still plastic into adulthood—requires that intervention be a lifelong endeavor."

Finally, she calls this project out for coercing its subjects:

"if neuroqueer lives are to have meaning, it is through behaviorist meanings, through bending neuroqueer bodies to neurotypical wills."

As an aside, while reading this I could not help but wonder how allism's ideology impacts society more generally, beyond the realm of autists. As Yergeau mentions, "autistic traits, taken together, represent everything that allistics devalue in an audience or social exchange". The autistic problem is a particular allistic construction, but the constituent components of that creation seems to affect all spheres of life.

For example, in the context of experiencing peer pressure to conform to normal prosocial behaviour, to what extent do private individuals, especially those who identify as introverts,  experience and perhaps resent this demand? Conversely, is queering its flipside, the willingness to be unsociable? The answer, I feel, is twofold - firstly in the extent to which that individual is perceived after an initial social encounter: once a social lack has been established, and it is deemed possible to overcome with a carrot and stick, the game begins. But secondly, neuroqueering is a way of attracting rhetorical desire outside the bounds of neurotypical rhetoric:

"autistic rhetorics might be regarded as a way of thinking not about 'how much rhetoric or how much autism can my brain hold,' but rather about rhetorical attraction or rhetorical desire, and what it means to roll, crip-queerly, outside the bounds of rhetoric."

Modes of Rhetoric

The blurring of lines when it comes to rhetoric is lent further support by thinking about rhetorical failure in the absence of autism:

"If we drop autism from the conversation, for example, it is very easy to state that all rhetorical exchanges might be characterized as failure or, at the very least, failable"

Yet the author frequently encounters resistance when suggesting that autism might be rhetorical. She relates a poignant exchange during a graduate student conference. After she suggests that autistic people are rhetorical the backlash ensues.

"One such comment came from the mother of an autistic child ... 'I am deeply uncomfortable in thinking about autism as rhetorical.'"

The author went even further and outed herself as autistic, yet to no avail.

"I was an autistic person declaring myself to be rhetorical, and a posse of Professional Type people fervently swooped in to deny me that right. How dare I consider myself among them, the rhetorical? How dare I insinuate that people like me can rhetorically act?"

Autistic rhetoric is not necessarily convergent to neurotypical rhetoric. In fact, it would seem that more often than not it diverges. This is perhaps the key to understanding neurotypical disorientation, and no doubt mutual misunderstanding. For this reason Yergeau rejects reformed neurotypical rhetoric as amenable to autistic rhetoric and social exchange. She compares and contrasts persuasion and invitational rhetoric, and finds both wanting. Invitational rhetoric, which some find appealing, the author mistrusts:

"it is better termed 'invitation only' wherein marginal bodies are immanently excluded rather than immanently valued" because, as she notes from experience, "an invitation to take antipsychotics might seem optional or self-effacing, but when that invitation is posed by a lab-coated doctor ... invitation might be more accurately read as demand"

Invoking Lovaas again, this distrust is amplified:

"When the stakes are as severe as bodily annihilation, do those without power really wish to invite the presence and purposes of those who would do them harm? What peace is there to be made? When is rhetoric ever safe?"

This point is supported by the fact that "Such interlocutors [of invitational rhetoric] are often white, able, cisgender, and/or straight, agilely drawing upon inventional resources available only to those most rhetorically mobile."

In other words, there is a clear structural power imbalance. As with racism, the process is institutionalised.

"while rhetoric demands reciprocity, it also operates from asymmetrical standpoints"

Diplomatic rhetoric, another rhetorical mode critiqued, in a way encompasses both invitational rhetoric and persuasion:

"Rhetors employ diplomatic methods as a structural means of sometimes persuading, sometimes inviting audiences to a given table."

Diplomacy is also interesting for the way in which it "functions as a metonym for rhetorical exchange, or the kinds of sociality that rhetoric privileges".

Yergeau counters the logic of diplomacy by invoking "a different Zeno, not Zeno of Elea, but Zeno of Citium. A fourth-century philosopher, Zeno regarded rhetoric as a diplomatic exercise, what he termed an open hand. Logic or dialectic, however, was represented by a closed fist." She proposes that, despite expectations to the contrary, "there is value in the clenched hand, the antidiplomatic disclosure. As in, 'Fuck this. I’m autistic.'"

As another aside, in her book on racism Beverly Tatum talks about allies in the white community. I wonder how that might fit into Yergeau's critique of rhetoric.  In other words, how do autists find allies within the allistic community? This might seem problematic given the characterised differences between allistic and autistic rhetoric, and there not be any simple common or neutral ground. However the reasonable starting point would seem to be for allists, who are structurally privileged, to become more aware of the damage done to autistic lives through institutionalised rhetorical and prosocial practices, and to proactively modify it. Perhaps this could even lead to deeper insight into the harm that the general allistic ideology is doing to other allists...

But onwards. The reference to rhetoric's open hand and closed fist goes back to Edward Corbett who

"famously refigured the contours of Zeno’s analogy, suggesting that rhetoric’s open hand often serves as a gatekeeper, preventing marginal bodies from participating in civic spaces [...] [his] reimagining of the closed fist — as provocation rather than logic — was especially indebted to activist strategies, such as boycotts, sit-ins, marches, riots, and even tactical acts of aggression, namely vandalism and violence."

Corbett describes the closed fist rhetoric as "muscular rhetoric" or "body rhetoric". Whereas diplomacy is "for the few", closed fist rhetoric is for the "'dispossessed, the disenfranchised in our society - poor people, students, minority groups - people who do not have ready access to the established channels of communications'".

This applies to autism and racial intersectionality, where "white autistic children might be represented as hapless victims of neurology, [but] autistic children of color are often represented more deterministically and violently, as products of bad parenting or as volcanoes waiting to explode".


The moment of being diagnosed as autistic is the moment when a life changes forever. "For the neuroqueer ... diagnosis tends to be all consuming and temporally contingent". Countering such diagnosis calls for a way that "promotes a crip-queer ethos", a "kakoethos" that "entails opposing, countering, and neuroqueering that which is typically framed as authoritative and credible."

As we've seen, allism is aligned with normative and prosocial rhetoric and therefore serves as a marker, a "mechanism for regarding the neurotypes of the nonautistic - for calling attention to both a neurological ideal and a neurological ideology".

Kakoethos is the counter value. If allism is associated with centre and linearity, "the kakoethos that attends counter-diagnostic disclosures holds radical potential because it queers perceptions of center, linearity, residence, and rigidity".

Yergeau has deep misgivings about allistic strategies, and her persisting aim is to reclaim a space for autists by neuroqueering allistic rhetoric:

"autistic subjects stake and deny rhetoricity by queering what rhetoric is and can mean, by in/voluntarily middling and absenting themselves from rhetoric’s canons." 

The act of neuroqueering suggests "stepping out of rhetoricity altogether, and questioning the desirability (and at times tyranny) that rhetoricity imparts." It is a uniquely inventive activity, which helps to define autism's positive identity:

"to be autistic is to negotiate inventional movements, movements that straddle the rhetorical and the non-rhetorical, that muddle and murk. Like any inventional movement, autism’s is configured by its coalitional histories."
Following Bre Garrett, Denise Landrum-Geyer and Jason Palmeri, invention is seen as "the 'process of making connections, rearranging materials (words, images, concepts) in unexpected ways.… [Invention] manifests through the body, for a given body actively participates as an inherent material, alongside other materials, other bodies … in the ever-becoming, ever-shifting engulfment of semiosis.'"

The "embodied communication is not a site for intervention, as many clinicians would have us believe, but is rather a site of invention". Such embodied inventiveness also finds traction in the concept of motor schemes, rhetorical schemes that  are "embodied, echoed, and cripped, a perverse way of involuting (i.e., making involuntary) discourse on elocution or rhetorical gestures".

Autistic invention can, and often does, happen at the expense of allistic rhetoric, which tends to be more linear:
"Neuroqueer rhetoricity doesn’t orient on a line but instead collapses shapes and diagrams of all kinds — disorienting and unorienting participating bodies."
This disorientation follows from the activity of demi-ness which has "a queer attachment to remnants". For example gender and sexuality are "fragmentary and oscillating. To claim a demigirl identity, for instance, is to suggest that one holds a partial or shifting relation to some construct of girlness." The demi figure is borrowed from queer communities, and in autism echophenomena like echolalia would be examples of how demi-rhetoric navigates.

Such invention is invention even if it does not expressly intend to invent:

"invention need not be positive to be considered invention ... Echoes proliferate, jump-start, and interrupt... Each echo can constitute its own discursive unit, and, as I’ve been suggesting, it can also serve as a placeholder for multiple meanings. These multiple meanings might spread or shift over time, or they can fill one singular echoing act, signifying multiple meanings or feelings simultaneously." 

In other words, it's what they signify that's important - not what they intend. They do not even require an audience:

"Can we declare echoes as rhetorical failures when they do not seek human interlocutors to begin with? (Answer: hell no.)"

These invented acommunications follow a logic that do not have to conform to language and gesture as understood through the neurotypical lens. For example "echolalia’s meanings lie more in affect or anxiety than they do in the bounds of syntactic units". (The language of dreams comes to mind as vaguely analogous, a 'language' whose meaning relies on an immersive experience rather than syntactical understanding.)

Autistic invention arises from autism's necessary straddling of two worlds, where "autism is a negotiation between rhetorical and arhetorical worlds. And, while at times these worlds may be idiosyncratic or mutually unintelligible, these worlds hold value, meaning, and at times meaninglessness."

Understanding this multimodal experience is to understand the danger inherent in a diagnosis of "autistic spectra", which only serves one of the two worlds: the allistic one.

In a more clinical sense, and following the embodiedness of demi-rhetorical neuroqueerying, it might be better to consider autism as sensorimotor divergence in the way Silvio Savarese proposes:

"Savarese contends that regarding autism as sensorimotor divergence more accurately represents autistic movements between volition and avolition, and it does so in a manner that respects and maintains autistic people’s humanity. In other words, sensorimotor approaches resist spectra and diagnostic fixity."

Activities usually seen as "symptoms" of autism, for example stimming and echolalia, can gain depth and dignity in such a definition. More generally, it also permits a broader view for rhetors in general, by looking at signification rather than meaning:

"Echophenomena do not symbolically represent so much as they immediately, and often acontextually, signify."


In "Authoring Autism" Melanie Yergeau asserts autism's identity and freedom positively, but never trivially. Autism is a complicated, interwoven subject with a painful history. She borrows from other disciplines, including disability studies and queer theory, and builds her thesis with great purpose. The reader acquires a rich appreciation of both autistic pain and potential:
"Neuroqueer demi-rhetorics are demi-rhetorics of gain and of pain. And without these queer ticcings toward queer futures, we all stand to lose a great deal"

Sunday, December 16, 2018

Neurotribes and Authoring Autism - Part 1

Neurodiversity as a social and political movement is something that's only come to my attention fairly recently, through the lens of autism. Even six months ago I thought of autism in much the way that it was popularised in Rain Man and Little Man Tate: as a specific type of giftedness. The term Asperger's and the phrase 'on the spectrum' has entered the popular lexicon, but is stil often used in a euphemistic rather than a clarifying way.

I now have a much better understanding of what is at stake thanks to two books I've been reading the last few months: "Neurotribes", by David Silberman, and "Authoring Autism", by Melanie Yergeau.

In this blog post I will kick off with "Neurotribes", a wonderfully accessible introduction to the field. In the next blog post I will look at "Authoring Autism", which is a much more theoretical take - and also where things get really interesting.

"Neurotribes" tells the story of autism from the days before psychiatry and the medical establishment entered the fray. It contrasts the careers of socially awkward scientists like Henry Cavendish and Paul Dirac, who were likely to have been high functioning autists, with the fate of children under the psychiatric supervision of later diagnosticians like Leo Kanner. In the latter case the kids usually ended up in psychiatric wards.

It is a heartbreaking story, all the more so for the sensitive progress made in Vienna before the war years, until Hitler's policies tainted everything. Hans Asperger and his colleagues, including Sister Viktorine, constitute one of very few clinical teams to emerge with an enhanced reputation by the end of the book. Asperger afforded his charges dignity by not focusing solely on their disability, but by recognising their unique characteristics and potential, realising that they required different learning methods. He called them "little professors".

The reputations of later autism pioneers like Leo Kanner, Ivor Lovaas, and Bruno Bettelheim fare considerably worse. Through a combination of parental blame (Kanner and Bettelheim) and behaviourist normalisation (Lovaas) they ensured a fraught atmosphere in which the medical establishment inevitable became at odds with the families of autistic children. American psychiatry's narrow focus on the negatives and judging parents as complicit in their becoming autistic meant that families were left alienated and feeling disempowered.

The war years complicates the picture. There is plenty to suggest that Kanner's breakthroughs may not have come without the help of colleagues who immigrated and joined him from Asperger's Viennese clinic - including Sister Viktorine herself.

However the American establishment's belief in a top-down application of medical science over an empathetic, empowering approach meant that exasperated parents eventually started taking matters into their own hands. Bernard Rimland, who founded both the Autism Society of America (ASA) and the Autism Research Institute (ARI), was instrumental in shifting the balance more in favour of parents.

Parents were starting to realise that autistic children didn't need more therapy, à la Lovaas' horrifying behaviourist methods, but instead more recognition for the learning requirements of their children. Meanwhile Lorna Wing, over in the UK, rediscovered the work of Hans Asperger and saw that autism was more of a spectrum than the restricted version Kanner had postulated. Her influence on the expansion of the DSM diagnostic criteria meant that soon more children were being diagnosed than ever before, affording them the official educational assistance they needed. In DSM-V, the most recent version, autism has been redefined to include a much wider variety of related disorders under the bracket of Autism Spectrum Disorder (ASD).

"Neurotribes" also takes a look at the contribution made by "Rain Man", a film that did so much to bring autism to public consciousness. After reading Yergeau, however, it is clear that the next revolution properly starts when autistic people are finally empowered to speak for themselves, and be themselves. The precursor to this revolution comes in the form of an unlikely autism hero, Temple Grandin. Her story is heartwarming in a completely unexpected way, and I can definitely recommend the film version of her life in which Claire Danes stars as Grandin.

What makes Grandin's contribution unique is that, with the help and belief of her mother, she uses her own creativity and ingenuity to find a way to exist in the world that is in line with her autistic nature. The story of how she became an unlikely spokesperson for autism is now legendary, and it is easy to see how her story inspired many who never had a role model to look up to.

"Neurotribes" delineates a clear arc from extreme disempowerment to relative empowerment. This is an important realisation. We start with the pre-medical establishment, when inherited wealth and status in society (Henry Cavendish's parents were Lady Anne de Grey and Lord Charles Cavendish) is practically all that could save a handicapped child from a place like the Bethlem Royal Hospital (commonly known as Bedlam).

The next stage starts with the medical establishment's evolution of psychiatry, as early as Eugen Bleuler's designation of autism as a type of schizophrenia in 1911. However it is only during World War II that psychiatry finally provides autism with a more formal and independent diagnostic, albeit still under huge clouds of confusion and misunderstanding. In the following phase we see ordinary parents increasingly demanding better lives for their autistic children, and gradually taking control from the establishment authorities by forming their own societies like the ASA. Finally, autistic people themselves - people like Temple Grandin - begin to find ways to succeed on their own terms and make their voices heard.

In the internet era, Silberman further suggests, many people living with autism began to see ways of establishing community in the online world - ways that didn't rely on the usual types of stressful socialisation prevalent in "normal" society. In this empowering and interconnected world people with autism have increasingly found ways to assert themselves and make their voices heard. Neurodiversity, both as a social movement and as a part of wider identity politics, has now become part of a global conversation.

Against the backdrop of this brave new world Melanie Yergeau brings her theory rich thesis full of fresh and radical ideas. I discuss "Authoring Autism" in the next blog post.