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Semiotic Spectrumite

First post, in which I introduce the focus of this blog on autistic culture

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.

 

Copyright © Semiotic Spectrumite 2016. All rights reserved.

 

[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

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The belief in a theory of mind is a disability

“On the walls of the cave, only the shadows are the truth”

‑ Plato ‑

There is a fable attributed to the Chinese philosopher, Zhuāng Zǐ, entitled “The frog at the bottom of the well”, or alternatively, “Glancing at the sky from the bottom of the well”. The fable concerns a frog who, seated in a deep well, has a very limited perception of the sky and, being unable to see anything beyond his well, is not even aware that more sky or even the great ocean exists. He is content paddling in the water at the bottom of his well and cavorting around its edges, feeling very secure in the belief that this is all there is to the world, or at the very least, all that really matters.

In modern Chinese and Japanese, this has become a metaphor for a person with a naïve and limited view of the world. From an epistemological perspective, however, a frog sitting in a well describing the sky is an apt description of each and every one of us, whereby the walls of that well, which shape and delimit what we perceive, are comprised of our experiences, acquired knowledge, but perhaps most indiscernibly, our neurology. We might refer to this as a “neurocentric” view, and one that is difficult to transcend at all and impossible to transcend completely.

Thus if we are a society comprised of individuals each occupying our respective well, each of us describing the sky as we see it (mine has a cloud that looks a bit like a pony), our engagement with one another in a collaborative effort to define a shared reality by calling out our individual perceptions creates a separate and non-experienced, but cognitively grasped understanding of the sky that we presume is more or less shared, and that serves a pragmatic function of forging a linguistic and cognitive bond between us.

Presuming that all of our wells are unobstructed, are built vertically in more or less the same geographic location, and open upward towards the sky, variations in our experience of the sky will not be so great as to make communication between us difficult.

But what happens if someone’s well does not conform to these shared characteristics, and instead, the walls – our neurology – give us a horizontal view out to the sea? Or are covered by a winch and roof? Or are located at a significant distance where the weather is very different? This is the situation for those who have conditions that make them neurodiverse: when someone is autistic, for example, and has a vastly different sensory experience, takes in very different quantities and kinds of information, organizes that information using very different cognitive structures and communicates that information differently.

And this brings us to cognitive empathy or theory of mind, which is posited as the ability to know what another person is thinking or feeling. We cannot really know what another person is thinking or feeling – instead, we can talk about what we are thinking and feeling, and compare one another’s descriptions of thoughts and feelings against our own experience. In semiotic theory, Wittgenstein addresses this within his private language argument, and specifically his Beetle in a Box thought experiment, in which he attempted to describe how we feel our own pain and only our own pain, but must arrive at a shared concept of pain, since language can only be coherent if it is mutually comprehensible.

In brief, each person has a box containing a beetle, however no individual can see the beetle in anyone else’s box, and each individual can only experience the beetle in his or her own box. Thus the only pain (joy, fear etc.) you can know is your own. Nevertheless, we talk about beetles as though we all know what a beetle is because pragmatically speaking, the characteristics of the beetle in each box (or absence thereof) is irrelevant to the real goal, which is arriving at an agreement that meaning is shared and therefore that language is cohesive and can be used to bind us socially and negotiate amongst ourselves.

We can speak about the shared value of beetles, the utility of beetles, the dangers of beetles, all without ever needing to verify the existence of or relative qualities of each individual beetle, a beetle being a metaphor for an abstract concept or an experience such as pain, joy, fear, love, etc. that cannot be shared, language thus consisting, to a large extent, of beetles in boxes, as it were.

Thus we mediate our experiences through language, and theory of mind cannot be a sharing of experience, but rather, must be a shared, pragmatic use of language (including both verbal and non-verbal communication) based on assumptions that, despite any parametric differences, our neurological structure, and hence experiences, must be more or less the same. As such, if persons with a typical neurological structure interact and wish to understand what the other is thinking or feeling, considering what they themselves would be thinking or feeling will be sufficient to allow them to arrive at a linguistic (verbal and/or nonverbal) expression of that experience that both subjects agree adequately reflects both their respective individual experience, and a presumably shared experience.

Theory of mind is declared the native domain of neurotypicals; a kind of transcendent ability that is regarded the basis for communication and, in more inflated estimations, is celebrated as the very thing that defines us as human. A lack of theory of mind, or “mind-blindness”, on the other hand, is attributed to autistics as a kind of deficit. This supposed deficit is expressed as a lack of empathy on the part of autistics, sometimes carefully parsed as a lack of cognitive empathy (the ability to know what another person is thinking/feeling), but far too often, sloppily conflated with a lack of affective empathy (the ability to feel compassion for another person).

And in pragmatic terms, autistics are indeed frequently unable to discern or know what another person might be thinking, while a neurotypical person is often able to discern what another neurotypical person might be thinking or feeling. As I have noted in previous entries in this blog, this works between two neurotpicals, not because they have insight into the thoughts or feelings of other people, but because there is a statistical likelihood that they would be thinking or feeling the same thing. They are sitting in adjacent wells, describing bits of sky that share the same cloud. Or we might say that their individual experiences of their respective beetles are similar enough that the value, utility and dangers associated with those beetles correspond sufficiently to prevent disrupting the perception that meaning, but also experience, is shared.

More than that, neurotypicals being predisposed to organize the world according to social interaction and normative social convention rather than by systematizing large quantities of discrete sensory data using logic (the domain of the autistic), neurotypicals blur the lines between the privately experienced beetle and the pragmatic, shared representation of a beetle and declare all beetles in all boxes identical. Their non-reflective embrace of the notion of theory of mind is, unto itself, a kind of mind blindness: a blindness to the reality that no one can ever know what the beetle in someone else’s box is like and that, for some, a highly divergent neurological structure means that they cannot participate in the language game by which meaning is forged in social interaction.

And this is where the neurotypical belief in theory of mind becomes a liability. Not just a liability – a disability.

Because not only are neurotypicals just as mind-blind to autistics as autistics are to neurotypicals, this self-centered belief in theory of mind makes it impossible to mutually negotiate an understanding of how perceptions might differ among individuals in order to arrive at a pragmatic representation that accounts for significant differences in the experiences of various individuals. It bars any discussion of opening up a space for autistics to participate in social communication by clarifying and mapping the ways in which their perceptions differ. Rather than recognize that the success rate of the neurotypical divining rod is based on mere statistical likelihood that the thoughts and feelings of neurotypicals will correlate, they declare it an ineffable gift, and use it to valorize their own abilities and pathologize those of autistics.

A belief in theory of mind makes it unnecessary for neurotypicals to engage in real perspective-taking, since they are able, instead, to fall back on projection. Differences that they discover in autistic thinking are dismissed as pathology, not as a failure in the neurotypical’s supposed skill in theory of mind or perspective-taking.

Ironically, constantly confronted with the differences in their own thinking and that of those around them, and needing to function in a world dominated by a different neurotype, autistics are engaged in learning genuine perspective-taking from the cradle on. The perceived failure in that perspective-taking is thus based on the fact that autistics do not rely on and cannot rely on neurological similarities to crib understanding by projecting their own thoughts and feelings onto others.

As such, autistics talk about themselves rather than others, a feature of autistic narrative that has been pathologized as “typically autistic” by researchers like Ute Frith. The fact that much of autistic writing is dedicated to deconstructing neurotypical fallacies about autistic thinking set in the world when they spoke about (or for) us, and to explaining differences in autistic thinking in order to broker mutual understanding remains unremarked upon, as it would have required adequate perspective-taking to have identified this.

Thus, if we were to summarize the effect of neurotypicals sitting in wells that are structured in much the same way, delimited in much the same way, oriented in the same general direction and located in the same geographic location, manifested as an unassailable belief in their natural gift of theory of mind, we would have to conclude that this belief in theory of mind severely impairs neurotypicals’ ability to perceive that there is sky or even the great sea outside the narrow limits of their purview. It also necessarily impacts their cognitive empathy vis-à-vis autistics and, sadly, their affective empathy as well.

This deficit in neurotypicals needs to be remediated if autistics are to have a chance to participate as equals, because the truth is, in this regard, autistics suffer and are excluded from social communication not because of our own disability, but because of neurotypical disability.

Copyright © Semiotic Spectrumite 2017. All rights reserved.

We need a map

 “What is a fantasy map but a space beyond which There Be Dragons?”

‑ Terry Pratchett ‑

Several years ago, I began informally mentoring a family on my street, whose child had just been diagnosed as autistic. That mentoring primarily involved providing a child-sized pair of ear defenders, and sitting with the mother and grandmother and explaining why autistics do what we do: why buttons and shoestrings may be hard, why hair washing can be traumatizing, why hiding in a cupboard may be the best way to prevent a complete meltdown, why an autistic child who was perfectly behaved at the mall might still apologize for his behavior when he gets home.

A few months into that process, the boy’s grandmother asked me why he was flapping his hands. And of course I was aware that she was worried and upset about what seemed to her to be an extremely disturbing and highly visible new behavior, but I was also very aware that my emotional response more resembled what most people experience watching a baby take its first steps. I had to suppress an enthusiastic cheer as I thought to myself: “Aw, how adorable! He’s discovered stimming!”

I didn’t say it out loud, because I knew that it would not be well received, and I was able to allay her fears, explain the purpose of stimming, and successfully advocate for her grandson that his stimming should not be suppressed. But it made me aware that I was the only one celebrating what is undeniably a very important developmental step for an autist.

The familiar milestones that are celebrated when an allistic child successfully attains them become an occasion for anxiety, grief and embarrassment and when the autistic child fails to do so, the very definition of an autist’s disability. And when those milestones are met late, they are often celebrated in a manner that is tinged with relief, inseparable from notions of impairment. Moreover, it is not just that the celebratory course of allistic development is inevitably a course of failure and disappointment in autistic development. The achievement of milestones such as discovering stimming, which are critical to autistic development, are likewise not celebrated and instead, are met with the same anxiety, grief and embarrassment.

Under the best of circumstances, the autistic developmental course is a lonely affair that the autist must navigate alone. Autists rarely receive support in achieving their own autistic milestones like learning to stim, teaching themselves to read lips in the case of central auditory processing disorder, teaching themselves to withdraw to a dark, enclosed space to manage over-stimulation, etc. They find their way to these skills alone, often in the face of intense pressure to achieve skills that will come later, if at all. In the fortuitous case that at least one parent knows they are autistic and/or there are other siblings on the spectrum, normal autistic development may be celebrated within the family, but not in society at large. Few have such optimal circumstances.

The situation for many autistics in their 30s and older is even more isolating. Due to the relatively recent development of autism as a formal diagnosis, a vast number of adults are only now discovering and starting to come to terms with the fact that they are autistic. The way in which autism is diagnosis has changed, steadily and often dramatically, over recent decades (a topic unto itself), and it is worth noting that, prior to 1980[1], there was no diagnosis of autism per se, autism being mentioned within one of the criteria for what had been referred to as “infantile schizophrenia.” First identified as a disorder in 1948, even this was only codified in the first edition of the diagnostic manual in 1952. It has been estimated that those born prior to 1990 has a very narrow chance of having been accurately diagnosed, with the numbers misdiagnosed being highest for women, at 1 in 10 who actually are autistic.[2] Other factors compounds these poor rates, with people of color being 81% less likely to receive an accurate diagnosis, for example.[3] [4]

The normal autistic course of development undertaken by those who were not diagnosed as children was very lonely indeed, and that continues through what can be an extremely disorienting process of learning who they really are later in life. Given the numbers of people who, by necessity, are diagnosed or who self-diagnose late, not only is the loneliness of developing as a member of a completely different neurotype and in isolation from other autistics an integral part of autistic culture for many, but so too is the loneliness of grappling with a radical shift in identity and one’s place in the world decades later. The initiation into autistic culture can be challenging and isolating.

Some arrive without formal diagnosis, being self-diagnosed, which can create its own set of problems and self-doubt, but even in the case of diagnosis by a medical professional, the path to self-understanding and acceptance requires traversing the expanse between formal diagnostic criteria (which can be very problematic) and the lived experience as shared by autistics themselves – a migration from condition to culture. It can be overwhelming, especially in the beginning, and wading through the seemingly endless theories, information and discussions online looking for guide posts can be daunting or impossible, needlessly confounding the journey to Self.

Clearly each journey is unique to the traveler undertaking it. We enter the Autistic Tribe via various routes and often with vastly different experiences of the world and of ourselves, but some of what autistic adults experience when they discover that they are autistic is very similar. What follows are a few things that I wish I had known or that I wish I had been told when I finally started to understand my diagnosis from within autistic culture.

It isn’t a map. It isn’t even a continental outline, but it points to some of the places where we need to start the mapping process to take some of the bewilderment and anxiety out of finding our way back to the Tribe and to ourselves. Each of these is simply a pin in a blank sheet that notes where the path becomes difficult, and where we might fear There Be Dragons.

  • The process of accepting that one is autistic is fraught with conflicting emotions.

When you first discover as an adult that you are autistic, it resolves a lot of questions about yourself, your relationships with other people, and the world around you that you may have struggled with for many years. Knowing you are autistic can cut through a seemingly inexhaustible array of issues, as through a Gordian Knot, and that can be an enormous relief.

At the same time, that process of resolution can precipitate an extended process of self-examination and reflection on one’s life. Some of these thoughts touch on painful events or circumstances, so it is natural that there would also be sadness and discomfort when examining these things, even while you are feeling relief at having an explanation.

Your feelings about being autistic may cycle through relief, anger, sadness, grief, shame, pride etc. That cycle is normal. In essence you are revisiting and integrating your experiences in a different way and with a new understanding, and that is a cyclical process of growth, not a linear one. Initially, your emotions may cycle quite quickly, however over time, things stabilize and cycle more slowly until you arrive at a place where you feel you know yourself. (Hopefully we are never done growing).

  • Feeling relieved or happy about being autistic does not invalidate it.

Many people express doubts about being autistic in the early stages of processing, often because they feel they should not feel so relieved or happy about it. We are not generally taught that realizing that we have a disability can be a fortuitous thing, since the predominant perception of disability is that it is a “personal tragedy brought about by cruel nature”. (I will leave the discussion of the medical model of disability versus the social model of disability for another time).

There is nothing strange about being relieved or even happy to have a diagnosis of autism. You have lived with the disability your entire life, and especially if you have not been diagnosed, you were likely blamed for what were, in truth, neurological differences. Simply being different can result in a lack of acceptance by parents, siblings, schoolmates and peers, and bullying, not just in childhood but in adulthood, is so ubiquitous that key researchers have suggested it should be a diagnostic criteria. The negative aspects of having a disability were all there. A diagnosis just provides you with an understanding of why things may have been a struggle and a map as to where your strengths and vulnerabilities may lie so that you can stop building on weaknesses and build instead on strengths.

  • There can be intense grief after realizing you are autistic.

It is not at all uncommon for people to grieve when they understand that they are autistic. Particularly when one realizes this later in life, there can be a sense of loss about what we might have done differently had we just known. There can be anger at the help that was not available or not provided, even if none would have been available anyway. Depending on how much efficacy you have had in your life, the grieving process can be one of the most difficult parts. Revisiting past experiences to view it through this new lens of autism can also stir up old sadness and hurts that had hitherto remained buried.

If you experience intense grief about the realization that you are autistic and the losses, confusion and painful experiences associated therewith, it is important that you get support. There are not many counselors who specialize in assisting autistic clients who work with adults, since the focus in treatment is still almost exclusively on children. For most people, support comes from the autistic community. Having a mentor who is autistic and understands autism more thoroughly can be extremely helpful. At some point, it is a good idea to connect with the larger community online or in a local support group.

Identity is molded by experience on one side, but by social interaction on the other. Being a gregarious species, humans are hardwired to need social interaction to understand ourselves and to affirm who we are in the world at large. Finding the autistic community will provide an experience of autistic culture and the social affirmation of who one is among others who share that culture.

  • It can take time for self-esteem to recover.

It can take time for self-esteem that has been damaged by its rough encounters with the allistic world to recover. It can be very difficult to get rid of the negative feedback that others have given, even if you know that that feedback was incorrect and based on hostility towards and a lack of empathy for people of a different neurotype. One of the most positive ways to do that is to help other autistic adults as they start their process of self-discovery. It is sometimes easier to cultivate empathy for oneself by extending empathy to someone struggling the same issues of redefining their identity.

 

Copyright © Semiotic Spectrumite 2017. All rights reserved.

 

[1] American Psychiatric Association. (1980) Diagnostic and statistical manual of mental disorders. DSM-III. Washington D.C.: American Psychiatric Association.

[2] Marco, E. J. (2006). “Autism-lessons from the X chromosome”. Social Cognitive and Affective Neuroscience, 1(3), pp. 183-193. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2555419/

[3] https://www.ncbi.nlm.nih.gov/pubmed/21707353

[4] https://spectrumnews.org/news/disparities-in-autism-diagnosis-may-harm-minority-groups/

The Issue with Newman’s To Siri With Love: Complicity

To Siri With Love, by Judith Newman, is a highly contentious book that has sparked significant public conflict between the author and the autistic community. I will review the book here and detail some of the reception of the book, which speaks volumes about the issues that have been raised about the book itself.

Before examining the content in detail, however, I would like to start by immediately addressing the most significant issue with the book, and it is an issue that effectively renders all other criticism moot: the author, Judith Newman, has written a tell-all about her 13 year old son. It includes intimate details about his masturbatory habits, a long litany of what Newman sees as intractable impairments, his humiliations and a great deal of, sadly often inaccurate, interpretation of his behaviors by Newman. Her son was/is not of an age, when he could understand the implications of this book or give his consent.

This book effectively strips her son of privacy and dignity in an extremely public way (New York Times best seller list!), and he will never be able to truly recover these. His struggles with his disability, his most embarrassing moments, his humiliations have now been put on offer for public consumption. Every potential employer, lover or friend will easily be able to connect the dots and have access to this information. In a world where prejudice and a lack of empathy for autistics means that only 15% of autistics classified as “high functioning” (a problematic label unto itself) are able to find work and support themselves (despite being able to do the work in question), this book deprives him of the right to withhold his diagnosis or mask his differences in order to have a fighting chance at an independent life. It outs him. In perpetuity. Books have a long shelf life. It is dehumanizing to start someone off in life with this added burden; especially someone with a severe disability that affects their social efficacy.

I think that most people would have no difficulty understanding that writing a tell-all about your under-aged children is wrong, especially in an age when many parents are juggling issues of privacy surrounding simply posting images of their children on social media without their express content. I feel fairly confident that reputable publishing houses would reject a proposal for a tell-all about one’s children, if not least because there are likely has legal issues attached to this. The fact that this book could still be published and is lauded as “heartwarming” by people like Jon Stewart is because Judith Newman’s son, about whom the book is ostensibly about, is autistic.

The social niceties that protect the non-disabled from this kind of gross invasion of privacy do not apply to those who are disabled. And this is the reason for the vociferous backlash from the autistic community. The community largely regards the book as glib dehumanization and a communal claim to what should otherwise be private. As Goffman noted in Stigma: Notes on the Management of Spoiled Identity, “The more there is about the individual that deviates in an undesirable direction from what might have been expected to be true of him, the more he is obliged to volunteer information about himself, even though the cost to him of candor may have increased proportionally.”

This is the lens, through which the entire book must be read. So while it is indisputable that Newman’s writing has a certain appeal, her dry humor can be enjoyable and she can structure a fairly tight narrative, none of that rehabilitates the flaws of the book. It is a ceaseless invasion of privacy, both of her autistic son, but also of her non-autistic son and of various other people she names in the book. It perpetuates damaging myths, against which the autistic community continues to struggle, and it reduces her son and ultimately, the entire autistic community, to objects that reflect on and inform the real subject of the book: Judith Newman and by extension, the allistic community. The merits of the writing itself  simply cannot offset the fact that the subject matter is, from top to bottom, wholly dehumanizing. If you want to read Newman’s writing, try something else she has written.

While presumption that the lives of autistic people belong to the public domain and are available for rapacious public consumption is most obvious in the fact that this book exists, the theme is also elaborated throughout the book in repeated speculation about the status of various individuals relative to the autism spectrum, some public figures and some private citizens. It should be common sense that speculating on the disability status or diagnosis of others in a public forum is grossly inappropriate. I don’t know how many of the individuals named, speculated on or outed gave their consent. I do know that, aside from her sons, she failed to obtain the consent of a high-profile activist in the autistic community. Newman’s response when this individual questioned the need to describe her in sexualized and ableist terms was to express what a disappointment this person must be to her parents, and to wax eloquent about where her parents might have failed with her.

Newman’s need to place the parents of autistics in the center of autistic lives and personal narratives is mind-numbingly consistent. It shows up in the book as she outs two people that she went to school with, who she has belatedly realized were, in her view, autistic. (Again, she is diagnosing people in absentia without their knowledge or consent, and naming them.) She is careful to tell us that she never participated in the bullying, but then proceeds to describe them in ways that replicate the bullying and derision they received in school. In a far more public forum. In describing how her classmates beat one of these individuals on the playground, Newman soliloquizes: “But [name redacted], why did your parents, so hopeful and clueless, insist on sending you to a school where you’d be known as the retard?”

She takes this ableist slur into her mouth, as it were, without once commenting on how inappropriate it is for her to be using it. There is no distancing from it, no commentary letting the reader know this is a hurtful and distasteful way to refer to autistics (or anyone at all), and seemingly no insight into how that might make autistic readers of her book feel. Readers who were sent to school to be “known as the retard” because there was no other alternative at that time. Newman seems blithely unaware that not everyone has or has had private schools for their autistic offspring available to them. She spills no ink on the fact that the problem was not the autistic child or her parents: it was the bullies. She never once laments how the parents of the bullies failed so miserably in teaching their children to have empathy.

Autistics as appendage to their parents is a recurring theme in the book, and it is at the heart of a disturbing number of the many tell-all books, blogs and vlogs about autistic children. The parent is the hero or villain in the story: the autistic person simply the dehumanized backdrop to their heroism or villainy. Blame is again laid at the feet of the “clueless” parents in the next description of a boy in high school, whom she likewise names and diagnoses as autistic. This is followed by what is probably the cruelest and most uncomfortable description of another human being that I have had the misfortune to read. I will not cite any of it here. There is no framing of the description, and literally no empathy. To assuage her guilt, Newman notes that she managed to track this individual down and discovered (she tells the world) that he is still living with his parents. I suppose the subtext here, that a person’s underlying situation never changes, holds true for Newman herself. And all these years later, Newman is still holding these presumably autistic classmates up for public ridicule and humiliation.

The descriptions of her son are marginally more compassionate. It is clear in much of the text that she cares for her autistic son, but also that she has no fundamental grasp of autism or the nature of autistic symptoms. This is despite the fact that there are resources from actually autistic people readily available to give her insight into the experience and rationale behind such symptoms. Thus, of her son’s repetitive behaviors such as listening to the same songs or watching the same videos over and over (repetition being the third of the core triad of diagnostic criteria for autism), she notes that he enjoys this because the repetition makes him “feel smart”, the subtext of course being that he is not smart, and can only experience “being smart” by repeatedly watching videos intended for children much younger than he. And of course that, is not the reason autistic people enjoy and actually need repetition. It has been written about by autistic authors and bloggers time and time again.

The truth is that allistics have very little insight into autistic thinking and routinely get it wrong. They then assert falsehoods that overwrite efforts by actually autistic individuals to correct inaccuracies, and do so successfully by their numeric majority and the fact that allistics enjoy access to positions of higher prestige owing the prejudice and exclusion autistics face in an allistic-dominated culture. And it is no surprise that they get it wrong. The truth is, no one really has insight into what another person is thinking. We can imagine what we might be thinking in a given circumstance, and if our brains are largely similar with only limited variations in various types of sensory perception, cognition etc. (as is the case for allistics), you may even be right.

Sharing a neurological structure that is not only largely congruent, but also heavily tilted towards social communication and the formation of social consensus, the ability of allistics to postulate what another allistic is thinking – so-called “theory of mind” – is nothing more than a statistical likelihood that they will have similar thoughts and feelings in a given circumstance. If theory of mind were some preternatural ability, of which allistics are possessed and autistics not, allistics should have a great deal more insight into autistic thinking and the autistic experience. Alas, that is clearly not the case.

Autistics do not have the privilege or projecting their thoughts and feelings in order to claim to understand the thoughts and feelings of others. The fact that autistics make up roughly one percent of the population means it is statistically unlikely that they will be thinking the same thing as someone sitting across from them. And even among autistics, there is so much variation in neurological development, that there is not a reliable congruence in thought.

The result is that one of the primary deficits regularly attributed to autistics is their lack of theory of mind or “mind-blindness”; something that Newman remarks on with regard to her son with grinding regularity. And this points to one of the great ironies in Newman’s book, which sadly reflects the greater irony in the medicalized discourse on autism. Because the truth is, Newman gets it wrong over and over in her self-involved ruminations about her son and the motivations for his behavior.

Moreover, Newman incorrectly defines “theory of mind” as an inability to know that other people (those with vastly different neurological structure) HAVE their own thoughts and feelings, rather than an inability to intuit what those might be. And here we are, back at the dehumanization of autistics like Newman’s son; not just by Newman herself, but echoing the dominant discourse at large. Dehumanizing because it once again repeats the old lie that autistics are “incapable of empathy” (long since debunked, as research shows that in many cases, autistics experience affective empathy much more intensely than allistics), which leads to the justification for the lack of empathy shown autistics, and routine observations by so-called “experts” like Pinker’s now infamous claim that autistics have more in common with robots and chimpanzees, and that without non-autistics, there would be no culture, autistics being incapable thereof. More than that, “theory of mind” is regularly touted as the very thing that defines us as human. By inference (another ability that Newman claims autists lack), those who are declared lacking in “theory of mind” are excluded from the human fold.

The most prominent criticism of the book has been focused on Newman’s lengthy contemplation about whether or not she will attempt to gain power of attorney over her son when he turns 18 in order to forcibly sterilize him, because she cannot imagine him as a parent and when she imagines him having sex (officially too much information, Judith), she imagines the soundtrack the Benny Hill show. I suppose this is meant to be humorous. Bear in mind that at some point, her son will likely read that and may not be as amused. She can’t imagine him being responsible enough to use a condom (it’s like she never considered what it would be like to have a teenage boy), and then cites as evidence of his glaring incompetence the fact that he has difficulty buttoning buttons. (Motor apraxia is a consistent symptom of autism; deficits in fine motor coordination are not a barrier to parenthood.)

She spends an entire chapter on the theme, and returns to it again later in the book, and despite the fact that when discussing treating her son for being short, she notes that “Adults should be able to do exactly what they want with their own bodies. No exceptions.”, she doesn’t extend that to the right to reproduce or start a family.  Autistics like her son start families all the time. This is something that should be his choice. The autistic community’s outrage focused on eugenics, as people with developmental disabilities like autism were not only sterilized (and “euthanized”) by the Nazis, but were forcibly sterilized as a matter of public policy in the US as late as 1974 out of a fear that disability would be further disseminated. The practice continues today at a private level with autistic children and children with other disabilities being sterilized by their parents. For an examination of the issue, see the article in The Atlantic called “Sterilizing a Child, for a Better Life”, dated Sept. 19, 2013.

And of course it is a form of eugenics. But it is also a profound invasion of her autistic son’s bodily integrity and rights as a human being. And it shows the degree to which dehumanization is simply accepted and the lack of ego boundaries that renders Newman’s son a bodily and ontological extension of Newman herself.

Defenses of the book center on the claim that it is a “personal story”, and therefore not subject to scrutiny as to the validity of its truth claims. But the book also wanders with disturbing regularity into claims about what it means to be autistic. What autistic people think, feel, why they behave the way they do. Newman is making a claim to authority, propagating myths and harmful stereotypes about autistics and specifically, her son, while at the same time hiding behind the defense that it is simply a personal story. And I concur: it is a personal story. The story of Newman’s son. Not one that was hers to tell.

Truth be told, we have not collectively moved on from the bad old days of forcing disabled children to perform in circuses and parading disabled children across a stage to raise money for charity. Feedback provided to the author via social media has been met with very little interest on her part, or with open hostility. Many autistics who have attempted to address concerns with her have been blocked. This is despite the fact that autistics who have reached out have done so in part to let her know that many of the things she laments in the book as supposed evidence of her son’s impairment are really not an impediment to his success in life. Autistics grow up on their own developmental course, precocious in some areas and significantly delayed in others. More importantly, autistics continue to develop throughout their entire lives, and people with challenges like those of Newman’s son have gone on to lead productive and successful lives.

That should be very good news to Newman, who repeatedly expresses her concerns about her son’s future prospects. It is therefore striking that she has shown so little interest in talking with people who are actually autistic. Because people like Newman are not interested in what autistic people have to teach them about what their child’s experience and struggles might really be like. She is not interested in autistics who speak, or write for themselves. She belittles them, dismisses them, publicly ridicules them, and ultimately silences them by blocking them and by coordinating her friends to report autistic reviews of her book as “abuse”. At the end of the day, for people like Newman, it is really all about them, and their interest in autism is in how it reflects on them. They want a silent autistic body to hold in front of them like a ventriloquist’s puppet so they can speak for the autistic, and extend their voice into a domain that is not theirs to claim.

In the interest of not robbing Newman’s son of his voice, his privacy and his dignity, this book should not be further disseminated.

 

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