In an age in which an unprecedented volume of data lies at our fingertips and every topic, from the trivial to the catastrophic, is packaged in glossy soundbites, easily repeatable slogans, and memes, there is presumably no one who has not heard of autism, and who has not formed some opinion about it. Often, what we hear is the impassioned plea of a parent sounding the claxon to warn us that our children’s tender minds are being abducted and held captive by the vaccine industry, dire warnings of a burgeoning epidemic of autism, or a news report on the latest mass shooting with the word “Autistic” emblazoned beneath the grainy image of the suspected shooter. “Autistic” has become ubiquitous as a taunt in the schoolyard and online, replacing what is now delicately referred to as “the R-word” as a way to ostracize and ridicule those who are perceived as different. In short, autism has become synonymous with that, which is Other.

These portrayals, some of which originate with the professional community itself, are profoundly negative and at the same time, grossly shallow, both based on and fostering a priori assumptions that autistic individuals are at best lost souls imprisoned in an autistic body and brain, and at worst, predators and sociopaths. In one high-profile video released to the mainstream media by major autism-centered charitable organization as part of a fundraising effort, autism is portrayed as a monster that intentionally hides so it cannot be “caught” in time and prevented, stalking families in order to destroy them, drain their bank accounts, and break up the marriage. The narrator paints a sinister and anthropomorphizing picture, while the video shows a series of home-video clips of images of autistic individuals smiling and stimming, thereby conflating the “monster of autism” with autistics themselves, as though they were preying on their own families.[1]

Likewise, the head of a large charitable foundation in the UK very recently publicly stated that she could understand and would never judge parents who kill their autistic child[2]. On Amazon, the summary of the English language version of the South African novel (and now film), Raaiselkind (Riddle Child), a novel about the “mysterious” death of an autistic child, of which the mother is suspected, unapologetically notes: “Did she murder her child? And who could blame her if she did?” Undoubtedly this latter view forms the extreme end of the public perception and, sadly, at times, professional perception of autism, however what is equally undeniable is that these views are openly promulgated with very little organized challenge, save from the autistic community itself.

There is another trend in the portrayal of autism that, at first blush, appears more benign or even beneficial. Media representations of autism in the 21st century have forged a trope in which individuals, who are overtly identified as, or who are recognizable as autistic, are habitually portrayed as fumbling, absent-minded professor types or emotionless savants, who are gifted but robotic, isolated and yet blithely oblivious to their isolation. These are caricatures that highlight the autistic individual’s struggle with social communication as a source of amusement, where the laugh is at their expense. Any sense of guilt at making light of the person’s disability is ameliorated by the fact that the person is reassuringly depicted as being completely unaware that they are being laughed at.[3] At the same time, a darker twist on this reductive portrayal is the depiction of autistic individuals as predators or killers, such as a very recently released film, “The Accountant”, which spins a fantastic take about a “savant/sniper”, described in one review as “a mathematical savant, possessing uncanny skills that have led to the demise of a handful of the world’s most dangerous cons”.[4] Thus, public awareness of autism oscillates between alarmist fears of crisis, an antiquated memory of a diagnostic scope that was limited to the most profoundly impacted individuals with what was termed “infantile schizophrenia”, and a long-cultivated cultural perception of difference as exotic and/or dangerous, often in equal measure.

Until the recent publication of Neurotribes by Steve Silberman[5], few seemed to recall that the diagnostic criteria for autism have changed radically, even within the short span our lifetimes. Shocking statistics positing a meteoric rise in diagnoses are unquestioningly accepted as reflecting an increase in the number of autistic individuals, rather than reflecting a sharp increase in our understanding of the condition, the refinement of diagnostic criteria to accommodate the unique way in which autism manifests in each individual, and more vigilant screening. The view likewise fails to take into account the dark figure of adults who went undiagnosed in childhood, who now in their 40s, 50s, 60s and beyond, are finally seeking diagnosis in order to understand why they have struggled their entire lives with things that others seem to find so easy.

Public perception is shaped by the loudest voices in that discussion. Much of the discourse has centered on promises of a cure, although when examined more closely, these claims inevitably refer to efforts to identify and eradicate the presumed genetic cause(s) of autism and presumably screen and screen out autistics during pregnancy, evoking for many within the developmental disability community the eugenics crisis being faced by the Down Syndrome community right now, the practice of the forcibly sterilizing those with developmental disabilities (practiced as a matter of policy in the US into the 1970s and still practiced to date on an individual basis by parents, for example), and images of Hans Asperger’s “little professors”, who were dragged out of the clinic and left to slowly succumb to pneumonia as the Nazis swept over Europe, “euthanizing” the “feeble minded”, sometimes with the parents express consent. (Silberman 2015, 115)

In the midst of what is often a more organized or powerful force in defining autism, there have also been consistent efforts to challenge both the public and medical discourse about the condition, most of it coming from the adult autistic community, but increasingly from parents and practitioners as well, who have broken with the paradigm of “cure culture” to ask, not for cure, but for increased acceptance in society at large, and for a more humane approach to neurological differences and disability. Sometimes organized under terms such as neurodiversity or autism rights, these pleas for inclusion and the right to live and be accepted with the neurological status with which one is born have created an alternative discussion of autism based on what the autistic experiences, rather than the way, in which others perceive the autistic individual’s efforts to cope with that experience.

The purpose of this blog, therefore, will be to challenge cure culture, allistic (non-autistic) culture and neurotypical culture, and to promote, instead, an understanding of autistic culture as valid and as belonging to autistics themselves. Without delving into a more academic understanding of culture at this time (a formidable task unto itself), the Cambridge Dictionary defines culture as “the way of life, especially the general customs and beliefs, of a particular group of people at a particular time”. The concept of culture accommodates variations among various subgroups within the cultural framework (subcultures) and adequate room for all participants to have a say. Culture is self-defined by the participants themselves, and delimits the group. Approaching autism as a culture means that it can be approached descriptively rather than prescriptively, which is to say, the participants in that culture write the primary texts, while the self-appointed experts and observers who are not a part of that culture are relegated to writing secondary texts and what must be regarded as anthropological studies of a culture that they may observe, but may not join. And that is how it should be for a people who have observed that they feel like aliens so routinely that autism is frequently referred to as “wrong planet syndrome”, where autists are described or describe themselves as “anthropologists”, and where the predominant methods of treatment aim to initiate and force compliance with a dominant culture.

In this blog, I hope to contribute to the many autistic voices seeking to create an empathetic understanding of the experience of autism in allistic readers in order to expand both public and professional perceptions, which hitherto have focused entirely on how the autistic individual impacts others, often to the exclusion of aspects of autism that actually affect and are “disabling” to the autistic individual.

 

A note on the language I will use in this blog

It is currently common practice among many to use “people first” language for people with disabilities, however there is a prevailing sentiment in the autistic community (and many other disability communities vis-a-vis their own disabilities) that autism is not something extra and unessential that is added to an identity that is otherwise identical to that of a non-autistic person. Rather, autism affects core aspects of who one is as a person, including our sensory experience of the world, cognition, interests, values, language and communication, and relationship with others, to name but a few of the areas affected. As such, many autistic people report that they could not imagine who they would be if they were not autistic, and therefore “identity-first” language tends to be more widely accepted within the autistic community. I use identity-first language for myself (I am an autistic person, I am autistic, I am an autist), and I will use it throughout this blog.

It is essential to note here that as an autist, my viewpoints are an authentically autistic viewpoint. That does not make them valid for all autists, and I make no attempt to speak for the entire community. We are a disenfranchised minority that has been crying in the wilderness for an interminable amount of time. Nothing I say here should be used to silence the experience of another autist. It is for each autist to define their relationship to autistic culture (or indeed, if they even embrace autism as a culture) for themselves. These are my views on the matter. They are not prescriptive, but they are mine and they are validly autistic. I intend for my work to stand alongside the work of others in my community in a mutual act of defining who we are.

Further, on the matter of terminology, I make a distinction between the terms allistic and neurotypical.

Allistic is a term coined by the autistic community to refer to individuals who are not autistic. Just as autistic is derived from the Greek “autos”, which means “self”, the term is derived from the Greek, “allos”, which means “other”. Initially I had reservations about this term, as the “auto” in autistic has been applied to us by non-autistics, and is based on a misperception that autistic people do not want contact with other people. In a larger cultural framework, however, this pair of terms works very well, mirroring the phenomenon whereby cultures name for themselves is often a variant of “the people” (deutsch in German, for example), or in other words, “self”, while neighboring cultures were frequently referred to as “foreigners”, “outsiders” or “others” (welsh in English, for example, the Welsh having their own word, cymraeg, the etymological origins of which are “with country” or, again, “the people”, “self”…). That makes the use of the terms, autistic (self) and allistic (other), distinctly autistic-centric, and there is a poetry in that.

Allistic is generally regarded as a judgment-neutral designation, as it simply means non-autistic, making no claim about how “typical” the individual’s neurological structure is otherwise (thus it includes those with other neurodivergent conditions such as ADHD, epilepsy, bipolar disorder, schizophrenia, Down Syndrome, Tourette Syndrome, etc.). It does not seem meaningful to separate autistic off as the only signifier, and define people as non-autistic, because this implies that autism is a pathological state within a dominant and “correct” culture that must be named, while the dominant culture is apparent and requires no special signifier.

Allistic is sometimes used interchangeably with the term neurotypical, however while all non-autistic individuals are allistic, they are not necessarily neurotypical, and neurotypical actually refers to a subset of allistic individuals who do not have any significant neurological atypicalities. There have been numerous objections that no individual is “typical” and that everyone exhibits some degree of neurological variation, and while this is true and should be borne in mind, it needlessly complicates discussion, and overlooks some very basic facts about how we already talk about neurological difference.

To wit, the existence of the term autistic is significantly more problematic than the use of the term neurotypical. The much repeated “If you have met one person with autism, you have met one person with autism” points to the reality that, despite the fact that we are classified under a single category and labelled “autistic”, autistic people have a neurological makeup that differs vastly from autistic individual to autistic individual. As Silberman noted, by 2011, “molecular biologists had identified more than a thousand candidate genes and hundreds of de novo mutations associated with autism” (Silberman, 18), leading to the conclusion by one of the leading researchers in the field of autism, Stephan Scherer, to remark that “most people with autism are probably genetically quite unique, each having their own genetic form of autism”[6].

Perhaps more importantly, neurotypical culture – the culture that seeks to train and mold autistics to conform to a standard or norm in behavior and communication – defines itself as more or less homogenous, and therefore competent to put itself forward as that norm or standard. Thus while the idea of a neurotypical standard for behavior, communication and ultimately, culture, is a construct, it is certainly no more of a construct than that of autism, and it is a construct to which those who self-identify as neurotypical cling and, in an act of colonialist bravado, seek to impose and even inflict on neurodivergents with the complete range of censure, punishment and banishment available to a dominant culture. I therefore have no qualms about advancing the notion of neurotypicality and availing myself of that construct in the aid of facilitating a discussion that asserts autistic culture as its own equally valid cultural entity.

 

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[1] [Find Yaser]. (2016, April 20).I Am Autism commercial by Autism Speaks. [Video file]. Retrieved from https://www.youtube.com/watch?v=9UgLnWJFGHQ

[2] [reasonable hank]. (2016, July 11). Polly Tommey – June 11 2016 – will never judge a parent who has murdered their autistic child. [Video File]. Retrieved from https://www.youtube.com/watch?v=X6GOWDaDyyc

[3] Koeneman, Quinn. (2016, April 5) “The “Cute” Syndrome: A Survey Of Autism In Popular Culture.” Retrieved from http://wrongplanet.net/cute-syndrome-survey-autism-popular-culture/

[4] Roberts, L. (2016, Oct. 14). “Affleck, Autism, and ‘The Accountant’”. Retrieved from https://www.lifezette.com/popzette/affleck-autism-and-the-accountant/

[5] Silberman, S. (2015) NeuroTribes: The Legacy of Autism and the Future of Neurodiversity. New York, NY: Avery

[6] Jha, A., S. Boseley. (2010, June 9). “Scientists have the genetic causes of autism in their sights.” The Guardian. Retrieved from https://www.theguardian.com/science/2010/jun/09/autism-study-genetic-causes