Politics of Autism: Social Intuition, Stigma, and Diversity

Volume 1. No. 5

Politics of Autism: Social Intuition, Stigma, and Diversity

 

July 10, 2017

By Gordon Gates

 

Abstract:

While controversy lingers over the assimilation of Aspergers into autism spectrum disorder, this paper looks at diagnosis from the perspective of ASHFA (individuals previously diagnosed with Aspergers AS and identifying with high functioning autism HFS). Based on a qualitative insider study exploring diagnosis and autistic stigma, this paper explores the phenomenology of autistic stigma, how it relates to diversity of human social intuition, and addresses a paradox between the powerful validating discourse provided by diagnosis and the inherently disempowering effects of medicalization. Sociophenomenal diversity resulting from fundamental differences in social intuition fills the resulting gap as a validating discourse that provides an alternate framework for autistic identity construction consistent with the integrity of ASHFA as described by participants. This framework avoids the pathologization of diagnosis as a validating discourse and addresses the fundamental human difference that leads to much of the stigma experienced by this marginalized population


 

Politics of Autism: Social Intuition, Stigma, and Diversity

By Gordon Gates

The negatively perceived differences of social intuition associated with autism are seldom studied. This is largely because the very idea of intuition is often seen as vague, flawed, and unscientific in our objectivistic evidence-based culture (Lieberman, 2000). Various attempts have been made to name and describe the ability of humans to experience each other as unique beings. For example, Peter Fonagy defines mentalization as the capacity to conceive of conscious and unconscious mental states in oneself and others (1991, p. 639). Metacognition is sometimes used synonymously with mentalization, but as thinking about thinking (Middlebrooks, Abzub, & Sommer, 2014, p.225) this concept, like mentalization, tends to focus on the cognitive aspect of social behaviour and does not capture the living process of relationality. Although the ability to encounter and relate to others has been said to lie at the very core of our humanity (Bateman & Fonagy, 2011, p.xv), most of the terms used to operationalize this idea tend to over-emphasize the role of cognition. Although Gumley (2011) expands the definition of mentalization to include understanding emotional states, the characteristic priority given to cognition in the study of autism and sociality is problematic. Perhaps a reflection of this cultures typically despiritualized materialistic sensibilities, a narrow focus on cognition in relationship prioritizes the politicized manipulative aspect of interaction that is often deliberately concocted to present the self in a desired manner or achieve certain ends. Social justice is undermined because intellectually challenged individuals may have their moral status questioned or be seen as somehow less human in their ability to experience others (Carlson & Kittay, 2010). The way peoples ability to connect with each other is regarded also has important implications for our evolving understanding of autism, which is often seen to involve cognitive mechanisms of impairment that fundamentally undermine social connection.

The visceral experience of encounter goes far beyond having an intellectual theory of mind, if by this is meant the ability to represent mental states (Frith, Happe, & Siddons, 1994, p. 110) and the ability to predict other peoples behaviour on the basis of mental states (Frith and Frith, 2012, p. 334). Dant (2015) argues that theory of mind (and similar terms used in autism research) reduce human sociality to a cognitive function in an impoverished framework of persistent biological determinism (p.57). He suggests we build our understanding of human relationship on the philosophical concept of intersubjectivity, which in the tradition of phenomenological research seeks to explore the lived flow of felt encounter in the shared context of everyday life. Even the term intersubjectivity, however, seems like a dry academic term to describe such a dynamic, poignantly human process.

Krugman proposes the concept of mentalization be broadened to mean the minds innate capacity to make sense of social experiences and implicitly know how to respond to them (2013, para 1). In this paper, we will refer to social intuition as the pre-cognitive experience at the core of interaction between people and the irreducible experience of bodily felt encounter underlying interpersonal relationship. This experience, when we attend to it, always solicits a reaction even if it is only felt and not spontaneously enacted. The call and response of social intuition is a characteristically human flow of events that are just as intrinsically part of personhood for those of us with autism who struggle to function in a culture dominated by differently oriented others who have come to expect a certain range of social responses. The current paper is intended to contribute to dialogue about social intuition partly based on some of the results from a phenomenological study on autism and stigma conducted by the author (Gates, 2014). This qualitative research involved in-depth interviews with 5 autistic individuals and included the online thoughts of autistic people as well as my own experiences both as a clinician and an individual with autism.

As early as 1929 Wolfgang Khler noted how people seem to respond in an immediate way to each others feelings, thoughts, and intentions (Hacking, 2009a; 2009b). Building an early case for what this paper refers to as social intuition, Khler described the sense in which peoples inner states are directly obvious to each other (1947, p.137). It is interesting that Khler published a book on the behaviour of apes early in his career, especially in light of autistic author Dawn Eddings Princes powerful description of how she began her journey from being homeless and profoundly marginalized to being a professor of anthropology and critical autism writer by quietly observing apes and experiencing belonging in their presence (Prince, 2013). The organic agency of social responsiveness may be better described in terms of Gendlins felt sense (1981, p.11) or subliminal knowing (p.xv) than any necessarily inferential process (Dimaggio & Lysaker, 2010, p.22). Philosophical exploration about how people apprehend each others intentionality through the flesh of encounter can be found in various philosophers including Merleau-Ponty (1945/2006) and Wittgenstein (1980). Smith (2010) provides a good overview of this issue and articulates the sense in which he feels he can know my baby daughter is miserable simply by looking (p.748).

As the telegraphic sense behind human social plasticity, social intuition cannot be sufficiently operationalized with proverbial checkboxes that screen for quantified approximations of dominantly shared social understanding. As is the case with most things human, social intuition can be seen to manifest itself through a range of intentionality and expression depending on social context, linguistic ability, perceptual acuity, insight, stress, trauma, and genotype as well as mental and physical health. Addressing structural failures in which mentalization and the effort to appreciate other points of view can be acutely compromised by emotional dysregulation and other psychological factors (Brent, Holt, Keshavan, Seidman, & Fonagy, 2014, p.21) has been found to provide a mechanism of therapeutic change in borderline personality disorder (Bateman & Fonagy, 2004), psychosis (Brent, et.al., 2014), and disordered attachment (Morken, Karterud, & Arefjord, 2014; Sacco, Pike, & Bourke, 2014). Such breakdowns happen in autism as well, for example due to anxiety, flustering, melt-downs, mismatched orientations of language use, and social confusion. Fundamental issues of diversity in the area of social intuition, however, and the resulting stigma that may occur in relation to the mainstream, have not been explored. The research on which this paper is partly based addresses this gap in knowledge by looking at the experience of adults diagnosed with autism spectrum disorder. The project specifically targets the range of autism in which individuals were previously labeled with Aspergers (AS) or the never officially adopted term high functioning autism (HFA). This was before the DSM 5 collapsed the condition into a single diagnostic entity called autism spectrum disorder. In an attempt to retain what one participant called the flavor of the condition, such persons will be referred to in this paper as ASHFA. Autistic rights activist Amelia Baggs refers to us as autistic individuals who are stable in language or concepts (Autistic Self Advocacy Network, 2012, p.327).

This range of autistic presence is targeted not to devalue or dismiss those individuals located elsewhere on the autism spectrum, but because I was diagnosed with Aspergers as an adult and want to take advantage of the life experience and insider perspective this puts at my disposal. In agreement with the research participants, I do not consider my condition a disability but, as I have articulated elsewhere (Gates, 2016), largely an expression of sociophenomenal diversity that reflects a different quality of social intuition and relational style. Of course, there is more to it. I am easily flustered, have difficulty with emotional regulation, am ultra-sensitive to sensory experiences I find aversive, experience difficulty with organization and impulse control, am frequently self-absorbed, cling to routine, and have trouble with change. These have become manageable facts of life, more than routine challenges but characteristics I have insight into and can find ways to compensate for when I make the effort. People with autism, like everyone else, have different levels of insight, motivation to change, ambition, tolerance for others, and self-esteem. As human beings, however, were all in the same boat. We find our way in life the best we can with what weve got and the burdens were given. The capacity to work with our limitations can be seen to unify us more than our different challenges and abilities separate us.

Stigma, Shame, and the Politics of Interaction

In the study on which this discussion is partially based, participants gave poignant descriptions of bodily felt shame and rejection resulting from the stigma associated with their autism. One participant said he had heard himself being called retard on a number of occasions. Another graduated from college on the deans list but never got a call back from a job interview. Another reported that he had responded to more than 200 profiles on a dating website yet only went on 3 dates. Participants reported extreme difficulty making friends, not being heard, and not being included. Most people just dont bother talking to me, said one participant. Another complained he got the cold shoulder from people regularly and voiced a common theme when he said I just dont seem to fit in. Another said people dont want to include me; they make false and misleading assumptions about me. Another said people show utter contempt towards me for no reason. One participant said he was worried about his long-term health because of all the rejection he had experienced. The overwhelming source of pain and stigma was reported by participants to be associated with social interaction and the deployment of social intuition.

An interesting example of this came up just the other morning while I was waiting for my car to get fixed. To pass the time I picked up a Toronto newspaper that was lying on the courtesy counter. Flipping randomly through the pages, I found myself reading an etiquette column about the interpersonal complexities of gift giving. A woman had written in wondering if it was appropriate to give an expensive, thoughtful gift to a man she had just started dating. The columnist told her it was a risky gesture that could lead to awkwardness if her effort wasnt reciprocated, advising her to drop hints about her gift giving intentions. That way if he did not reciprocate the woman would supposedly know the guy was either a cheapskate, an emotional trifler, or a clueless clod who cant take a hint (Vanstone, 2005, p.11). The implication is that such a boyfriend is to be avoided. The columnist acknowledged this strategy might make the woman seem manipulative, but still advised her in this direction perhaps because such behaviour is considered routine and normal in sociodominant circles as a way of negotiating social interaction. However, the idea that a person is a clueless clod if they dont recognize hint dropping (and other sometimes unspoken political strategies in relationship) reveals unintentional prejudice towards those who do not operate this way, particularly those with autism. It is not so much that it stigmatizes a medical condition related to impairment, but radiates negative stigma on those who do not play along with the assumptions behind the persons social strategy. People who dont pick up on such politicized communication are painted at best as spoilsports to be avoided, at worst as less sophisticated, less worthy, slow, or kind of dumb. There are less judgmental explanations for their different social radar, however. For example, the person may not be in a financial position for such gift giving. More fundamentally, the person may not value the giving of gifts. As a group, people with autism do not typically engage in or appreciate this politicized kind of social behaviour and prefer direct, explicit communication. The kind of negative judgments demonstrated in the article, especially when they stigmatize the sociophenomenal difference of autism, can sting deeply.

Oh come, you may say, its only a silly newspaper article! Still, this seemingly harmless piece of trivial journalism activated a kind of post-traumatic stigma response in me. I have had so many experiences in which I have felt stupid, judged, and unworthy because I did not understand peoples social agenda that the little article awakened dormant feelings of pain, rejection, and defensiveness. Like the participants in my study, I have had people act arrogantly towards me, dismiss me, not take my participation seriously, and look down on me because my social awareness did not match their dominantly accepted one. There are times when stigma is evoked deliberately in terms of bullying, but more often such emotional suffering is not activated intentionally. The author of the gift-giving advice surely did not set out to harm anyone. Still, there is an element of conscious collusion with stigma when people make such judgments, when the patience, curiosity, and respect to appreciate how a differently oriented person may perceive things is reduced to stigmatizing assumptions. I know all too well what its like to be considered a clueless clod because of sociophenomenal difference.

Invisibility, Stigma, and Social Construction

There are continuously variable levels of what Goffman calls the visibility of a stigmatizing condition (1963, p.48). For ASHFA, their stigmatizing condition is often invisible and may be felt rather than explicitly seen. Not as apparent, for example, as seizures or the use of a wheelchair, there may be perceptible signs of difference such as lack of eye contact, inappropriate eye contact, overly pedantic and other unfamiliar speech patterns that range from inventive to concrete, or cognitive rigidity and self-absorption.[1] These characteristics exist along a continuum and can blend indistinguishably with mainstream expectations, but when they become clear markers of difference some dominant others may seize on these visible signs of diversity and take them as an excuse for enacted stigma such as bullying and discrimination. There are more subtle qualities possessed by ASHFA, especially those related to social intuition, that can mark them as different. The participants in my study reported that it is these subtle differences and the social behaviour associated with them that result in the most painful stigma. This has been my experience as the organizing participant of the study. It is also consistent with previous research that shows the stigma of Aspergers to be related to behaviour rather than the visibility of the condition or the medical label (Butler & Gillis, 2011; Shtayermman, 2009). It is such differences of sociophenomenal orientation, for example, that can make ASHFA seem like perfect victims (Klin, Volmar, and Sparrow, 2000, p.56). Despite the conventional belief that people with autism prefer social isolation, this vulnerability can be exacerbated by an overwhelming and frustrated desire to fit in that can lead to indiscriminate people pleasing and sometimes nave helping. Not immediately discerning the underlying social intentionality beneath dissembling others is a related issue. One participant spoke of the nave trust for others he experienced when he was younger. Others revealed difficulty sharing the same social wavelength as mainstream others at the best of times, not knowing what an appropriate social response is supposed to be. Another factor moderating the flow of autistic social intuition is obsessive interests that are sometimes difficult to put aside when interacting with others. One participant said he tries to find common ground in conversation, but admitted its difficult to do unless its about topics that interest me. Depending on the person and the situation, some people may see these qualities as positive traits or signs of eccentric independence. Others may feel they call for compassion (or rescuing). Some may dismiss the person exhibiting these qualities as lesser than themselves, walk away in frustration, or perhaps take advantage. Between the participants and me, the individuals in the study experienced all these reactions.

All participants in the study spoke about how they often find themselves at a loss in social situations. One participant said she often felt stupid and found herself in tears a lot of the time trying to understand what I was supposed to do in social situations. Another participant talked about the challenge of trying to logically construct how he was supposed to act in social situations. I just find myself telling myself in my head things like OK, now listen for a bit, add something now, dont rebuttal here, he said. Interestingly, Frith, Happ, & Siddons (1994) distinguished appropriate social responses rooted in in true theory of mind from behaviour the authors refer to as hacking, or constructing responses using rational deduction geared towards desired outcomes (p.110). The authors felt such hacking distorted their research results and theorized that such compensatory behaviour would not generalize from controlled research contexts to complex life situations. In reality, ASHFA often resort to deductive processes in order to engage with others when spontaneous social intuition fails. The fallback strategy of constituting social behaviour became most apparent in the complex area of dating. One participant described how there are a lot of non-verbal cues and expectations going into dating. Do we kiss? Do we hold hands? I never quite know what do. ASHFA often stumble along socially making things up as they go in order to fit in as seamlessly as possible. The fact they make such efforts at all and know when they dont fit in can be taken as evidence of theory of mind, but the problem may be more of a failure to cross-connect differing social aptitudes than one-sided impairments in the ability to ascribe mental states.

Phenomenologically, ASHFA seem to experience a kind of social blindness regarding social conventions and expectations others take for granted. This may be due to differences in social intuition that keep them from responding in normal ways. Participants reported experiences consistent with difficulties in the spontaneous processing of social information (Channon, et al., 2014, p.161) and an inability to grasp the silent expectations others with typical social intuition take for granted. Again, dating provides a poignant example. One participant described being in an intimate situation with a member of the opposite sex. He says he was just starting to like her, but got confused at one point because she was standing before him with her eyes closed as if expecting a surprise. He had no idea what was happening, but closed his eyes in order to play along. The moment passed and he could not figure out why she never acted the same towards him again. It wasnt until years later he realized he had rejected a woman expecting to be kissed. Another participant told about an experience in high school in which he bought tickets to a special event long in advance hoping to get a date. Strategically, he asked one of the plainest girls he could think of hoping that she, at least, would go out with him. He did not interact with girls and had not engaged with this girl at all in the past. Understandably, she declined. The participant said he was sad when he went to his next class, where one of the most popular girls in the school sat next to him. He asked her if she would like to go to the upcoming dance and remembers how she said yes enthusiastically. Did he smile happily? Did he feel lucky? No, he handed her his tickets and told her to have fun. The participant said he thought about this incident for years and could never understand why the girl seemed to want nothing to do with him after that. He said he did not realize until years later that he had unwittingly asked her on a date only to reject her. After getting it, he said he mourned the lost opportunity and felt colossally stupid, although he never mentioned being sorry for hurting her.

Social failures based on misunderstanding and misalignments of social expectation are rampant for ASHFA and consistent with research demonstrating that individuals diagnosed with autism score consistently lower on tests eliciting explanations for what makes social situations awkward, identifying inappropriate social conduct, and working out the significance of human behaviour (Channon, et al., 2014). The authors believe this is evidence that ASHFA have key impairments of mentalization (p.149). They go on to speculate that such findings may be associated with inappropriate responses in everyday social situations, though they note that little experimental work has explored this directly (p.152). My study, acquaintance with others with the condition, and lived experience all confirm the pragmatic connection between differences of social intuition and challenges in daily life. Difficulty processing commonly used linguistic constructions such as double entendres, irony, and sarcasm are characteristic, although the challenge is often appreciating the silent message being conveyed in the lived social context rather than the basic ability to understand these literary devices. Still, the difficulty extends far beyond the use of language. ASFHA are frequently blindsided in social situations because of their inability to read others, although whether this difficulty interfacing with sociophenomenally dominant others should be attributed to the local impairment of some inner mechanism or is more of an issue of systemic diversity remains to be worked out. Douglas Biklen (2005) theorized that such proposed mechanisms of impairment are not mechanisms at all, but metaphors that describe various challenges typical of autism.

Pragmatic challenges with lived interaction may show up as low scores analyzing social vignettes not because of specific impairments but because the experience on which to base the required analysis has not been accumulated. Such difficulties may not be best thought of as the impairment of an underlying mechanism but lack of acquired social experience due to exclusion and isolation. As developmental neuropsychologist Ulf Liszkowski (2013) maintains, low scores on social vignette tests may be because the interactive use of action predictions leads to a gradually abstracted inventory of action-context relations that is impoverished in ASHFA as a marginalized population with patterns of social cognition not shared by dominant others. In the same way there is nothing biologically wrong with the fusiform gyrus in autistic individuals who experience difficulties with facial recognition (Schultz, 2005; Tanaka, 2014), social intuition in ASHFA may be biologically unimpaired but differently activated. Chown (2013), based largely on the work of Klin, Jones, Shultz, and Volmar (2003), points out that the social is simply not as salient for autistic people (p.6), leading to diverse socio-active priorities and different patterns in the call and response of social intuition.

Organic Sense Emerging from Active Encounter

Klin et al. (2000) has noted that long-term relationships with peers can be a source of stigma resilience. Although the authors acknowledge they are only drawing on anecdotal evidence, they suggest that peers do not make explicit demands, but they also make few allowances (p.397). I interviewed the two roommates in my study that not only made allowances for each other but actively encouraged each others uniqueness out of familiarity and mutual understanding. Terms like theory of mind and metacognition do not do justice to the phenomenon of caring, bodily felt social intuition and need anticipation demonstrated by these individuals in regard to each other. Beyond the academic calculation of each others inner mental states, they appeared to engage in the same kind of organic, pre-analytical living responsiveness through which human beings naturally interact with each other. It is the kind of encounter between people that involves a familiarity presupposing appreciation of each other as thinking and feeling beings with unique inner realities. The kind of bodily felt encounter so touchingly demonstrated by these roommates underlies the complex social behaviour that allows a performer to feel the room and sense how long to hold a silence or allow a laugh; how a counselor senses when to introduce an appropriately challenging new perspective in line with the clients tolerance for change and worldview; how acquaintances, friends, and lovers seem to know when to release a hug; how a job applicant senses how long to hold a handshake with potential new employers to make a good impression; how individuals sharing guilty knowledge sense how long to hold a knowing look without drawing attention to themselves. Conventional knowledge has it that people with autism are devoid of or insusceptible to social intuition (McGeer, 2010). Yet the individuals in my study all described experiencing such situations, sometimes awkwardly and sometimes gracefully. That is how ASHFA are able to become actors, counsellors, and police officers who must sense the intentionality of others in complex specialized ways. The participants also described how the organic sense emerging from active encounter is often supplemented with various degrees of explicit cognitive calculation, although this diminishes spontaneity and makes social interaction more dependent on executive functioning. It is possible to exert deliberate cognitive control to override social intuition, for example when lying, manipulating, or practicing diplomacy, although conventional knowledge has it that having autism decreases the likelihood of this happening (Attwood, 2007). Did you ever hear the one about autistic individuals not being capable of deception? Autism does involve challenges with impulse control (which, along with working memory, organization, and time


management are part of executive functioning) that could make it harder to engage in subterfuge. However, the efforts people with autism sometimes make to avoid stigma, appear normal, and fit in despite feeling socially lost clearly indicate a degree of cognitive control as well as an ability to politicize and manipulate. Future research may better separate these factors out, but in terms of unfettered social intuition it is not theoretically determined mental states we respond to in others (Frith & Frith, 2012; Frith, Happe, & Siddons, 1994). We respond, rather, to bodily felt social encounter itself. This, at least, is when we experience the kind of interpersonal flow and belonging these ASHFA roommates demonstrated, as opposed to the strain of constituted performance. This may be part of the reason people with autism, even more than mainstream others, flourish when they live in supportive, non-judgmental communities that offer an embracing web of relationships (Donvan & Zucker, 2016).

When asked the advantages of having an ASHFA roommate, both participants immediately agreed that finding a roommate that wont lie, cheat, or steal from you is worth more than their weight in gold. They each described instances of being taken advantage of and outright robbed by sociophenomenally mainstream roommates. Perhaps their more politically mediated processes of social intuition lead sociodominant individuals to become manipulative and opportunistic with differently equipped marginalized others. I suspect an ethnographic study of roommates on the spectrum would be an insightful source of knowledge, possibly helping us better understand how exclusion, marginalization and victimization can be associated with differences of social intuition at the heart of autistic personhood.

A full examination of the study that inspired this paper is in development and scheduled for publication next year. Reinventing Ghost Town will discuss the experience of autistic stigma, sources of resilience, healing strategies, and effective ways to minimize stigma. The book will also develop an ethical framework of encounter that lays a foundation for acceptance and inclusion. Author Gord Gates has graduate degrees in philosophy as well as social work and has been a hospital mental health counselor for the past 8 years.

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[1] Self-absorption has also been referred to as an overwhelming sense of local cohesion (OConnell, 2010, p.20) that can lead ASHFA individuals to be overly focused on the linear details of insulated personal experience. This can result in an apparently misanthropic disregard for the engaged holism of lived situations. Such behaviour can be framed at least partly as a defensive strategy to manage stigma and anxiety, although it is more often articulated in terms of a cognitive impairment known as weak central coherence. This impairment has been theorized to be characteristic of autism (Happe & Frith, 2006) and has also been noted in brain injury and schizophrenia (Martin & McDonald, 2003) as well as personality and eating disorders (Lopez, Tchanturia, Stahl, & Treasure, 2009). These conditions all involve stigma, the role of which needs to be further researched.

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