Mind Your Language:
How Pathologizing Language Has Negatively Impacted the Neurodivergent Community
Presented at Graduate Research Conference, Edmonton, October 2024
Lisa Spencer-Cook
MAIS - Writing and New Media
Athabasca University
Abstract
Language is more than just a tool for communication; it shapes how we see ourselves and others. This thesis explores how pathologizing language negatively affects the neurodivergent community, particularly autistic individuals, by reinforcing societal perceptions of disorder and abnormality. Through examining linguistic frameworks, such as the Sapir-Whorf Hypothesis of linguistic relativity, and reviewing identity-first versus person-first language, this research highlights the power of language in framing neurodivergent experiences. It advocates for the adoption of identity-first language as a step toward creating a more inclusive society.
Preface
It is essential to recognize the individuality of neurodivergent people, starting with asking how each person prefers to be addressed. Throughout this thesis, "neurodivergence" will mainly refer to autistic traits and experiences, though it may include broader neurodivergent perspectives where relevant.
Introduction: Language Shapes Thoughts and Societal Attitudes
Language plays a central role in shaping our thoughts, beliefs, and social structures. According to the Sapir-Whorf Hypothesis of linguistic relativity, the structure of language significantly influences perception and cognition. As Sapir and Whorf describe, "People experience the world based on the structure of their language, and linguistic categories shape and limit cognitive processes" (Sapir & Whorf, 2023). This hypothesis suggests that differences in language affect not only personal thought processes but also collective societal attitudes. In the context of neurodivergence, this framework is particularly relevant, as language often frames neurodivergent traits in terms of deficits or disorders, perpetuating the stigma of abnormality.
Historically, neurodivergent individuals have been marginalized, often institutionalized, or perceived as inherently inferior due to societal biases. However, as understanding of neurology has advanced, diagnostic frameworks have evolved to allow a more nuanced view of neurodivergent traits. Rather than perceiving these characteristics as flaws, an inclusive approach sees them as natural variations in human diversity. For example, terms like “person with autism” linguistically detach a person from their neurological identity, suggesting a separable or fixable condition. This separation implies that neurodivergence is an undesirable trait, that needs to be corrected.
George Lakoff and Mark Johnson's work on metaphors further illustrates how language can carry implicit biases. They argue that metaphors in language create conceptual frameworks that shape our understanding of various concepts (Lakoff & Johnson, 2023). When applied to neurodivergence, the pathologizing language used in medical diagnoses often equates difference with a disorder, driving social perceptions that neurodivergent individuals are inherently impaired or less capable. This language does not just describe reality; it actively constructs it, perpetuating views of neurodivergent traits as deficits rather than as neutral or positive forms of diversity.
Internalizing Stigma: The Self-Concept of Neurodivergent Individuals
Linguistic framing influences not only how society views neurodivergent people but also how neurodivergent individuals perceive themselves. A study by Gernsbacher et al. (2016) found that language used by clinicians, educators, and family members significantly impacted autistic individuals' self-concept and self-esteem. When exposed to pathologizing language, neurodivergent individuals may internalize narratives that devalue their abilities, leading to reduced self-confidence and a diminished sense of agency. This demonstrates how language, when used carelessly or with implicit bias, can shape internal identities in harmful ways (Gernsbacher et al., 2016).
A large-scale survey conducted by Autism Ontario reflects a clear preference within the autistic community for identity-first language, with approximately 90% of respondents indicating that they prefer terms like “autistic person” over “person with autism.” This choice underscores the idea that neurodivergence is an intrinsic aspect of identity rather than an accessory or a condition that can be detached from the individual (Autism Ontario, 2019).
Background
I've been studying neurodivergence for over a decade, a topic I feel passionately about, especially as the mother of a brilliant autistic daughter. My aim is not to change anything about my daughter; rather, I want to help change how the world perceives her and others like her. My academic journey is rooted in this mission. As someone with an ADHD brain myself, I understand the challenges of navigating educational systems that are not designed for neurodivergent minds. If I can contribute to a meaningful shift in the neurodivergence movement, it would be to change our language to describe natural neurological differences. Language is one of the most powerful tools for changing perspectives.
Society still holds onto outdated views, perpetuated in media and reinforced by the way we talk about neurodivergence. Autism Speaks, for example, is a well-funded organization with significant media influence. Yet, it continues to frame autism in a negative light, seeking cures and supporting practices like conversion therapy. By using language that pathologizes autism, Autism Speaks has fueled widespread misconceptions, leading many to view autism as something undesirable or even something to be "fixed."
I often think back to an essay I read as a teenager: George Orwell’s “Politics and the English Language.” Orwell wrote, “If thought corrupts language, language can also corrupt thought. A bad usage can spread by tradition and imitation, even among people who should and do know better.” This resonates deeply with me. Language should be a vehicle for clarity and understanding, not a tool that perpetuates harm or distorts reality. The way we talk about neurodivergence can either foster acceptance and understanding or reinforce damaging stereotypes.
To clarify what I mean when I say that language shapes societal views: What is deemed “appropriate” behaviour and emotional response is deeply subjective and often rooted in neurotypical, ableist norms. These norms set expectations for how people should respond to social cues such as facial expressions, body language, and other contextual signals. Autistic individuals, whose brains may process information differently, often interpret and respond to these cues in ways that are considered atypical. For instance, an autistic person might not maintain eye contact or might react differently to emotional expressions. This is not a lack of social or emotional intelligence; it is simply a different, yet equally valid, way of interacting with the world.
For some autistic individuals, making eye contact can be uncomfortable or even painful, and sudden, loud noises may cause actual physical distress. Their limbic systems, the parts of the brain that process emotional and social information, may operate differently, leading to responses that diverge from neurotypical expectations but are appropriate within the context of their unique neurological wiring (Remi, 2017). This understanding challenges the idea that there is a single “correct” way to respond socially and underscores the need to respect diverse ways of experiencing and interacting with the world.
At the heart of this issue lies ableism, the assumption that there is one “right” way for the brain to function, with neurotypical brains seen as the ideal. This view marginalizes anyone who does not fit the mould, framing their experiences as pathological or inferior.
In academia, the word “normal” is used frequently, yet rarely defined. “Normal” is a nebulous concept, everyone has a different idea of what it means, and it belongs in a washing machine setting, not as a descriptor for human behaviour.
Over the years, I’ve heard countless well-meaning yet misinformed questions about neurodivergence. One of the most common is about my daughter: “Where does she sit on the spectrum?” This question exemplifies how language influences perception. People often envision the autistic spectrum as a linear scale, where one can be “higher” or “lower” on it. A spectrum is not a line, it is more like a pie chart of traits. An individual may experience challenges in certain areas and strengths in others. Asking “Where does she sit on the spectrum?” implies a misunderstanding of autism, and is subtly asking, “How does her neurology impact me?” or “How will she fit into a society centred around productivity?”
This question is often followed by another: “Is she high or low-functioning?” My usual response is, “In what? Math? Science? Athletics?” Everyone excels in some areas and struggles in others. The desire to classify people by “functioning” levels is inherently ableist and often serves to reassure the person asking about how a neurodivergent individual will impact them rather than understanding the actual needs and experiences of the neurodivergent person themselves.
Pathologizing Language and the Construction of "Normal"
The language surrounding neurodivergence often defines neurotypical behaviour as the standard, positioning anything else as an “abnormality” or “disorder.” This linguistic framing has far-reaching implications. By embedding the idea of “normal” into our language, society creates an implicit hierarchy that privileges neurotypical experiences over neurodivergent ones. Terms like “deficit” or “disorder” suggest that neurodivergent individuals are inherently flawed, needing “correction” or “treatment” to fit societal norms. This not only marginalizes neurodivergent people but also limits the range of acceptable human diversity.
Consider the Diagnostic and Statistical Manual of Mental Disorders (DSM), which historically uses pathologizing language to describe conditions such as autism, ADHD, and dyslexia. Descriptions often focus on “impairments” or “deficiencies” relative to neurotypical standards. For example, the DSM-5 describes autism spectrum disorder (ASD) as involving “persistent deficits in social communication and social interaction across multiple contexts.” Such language implicitly judges autistic behaviour against neurotypical norms, framing it as a lack or shortcoming. By using these terms, the medical community inadvertently reinforces a deficit-based model that influences broader societal attitudes.
Academic research has demonstrated that framing conditions as deficits rather than differences can lead to more negative perceptions among the public. A study by Cooper and Smith (2018) found that when autism was described with terms like “disorder” or “impairment,” participants were more likely to express discriminatory attitudes, supporting policies that marginalized autistic individuals. Conversely, when autism was framed as a natural variation in cognitive processing, participants showed more acceptance and a greater willingness to support inclusion initiatives (Cooper & Smith, 2018).
This framing extends beyond clinical settings and permeates everyday language. Teachers, for example, may unconsciously adopt this deficit-based language when discussing neurodivergent students, which can affect expectations and interactions in educational contexts. Similarly, media representations often emphasize “overcoming” or “coping with” autism rather than celebrating neurodivergent strengths and unique perspectives, further entrenching the view that neurodivergent traits are obstacles rather than aspects of identity.
Identity-First Language vs. Person-First Language
The debate between identity-first language (e.g., “autistic person”) and person-first language (e.g., “person with autism”) is central to discussions on respectful language for the neurodivergent community. Advocates for identity-first language argue that it affirms neurodivergence as an integral part of an individual's identity, not a detachable condition. In contrast, person-first language, while initially developed to emphasize the person before the diagnosis, often carries an implicit suggestion that the diagnosis is an undesirable part of the individual’s identity—something to be minimized or separated.
For example, the phrase “person with autism” suggests that autism is a condition or burden carried by the individual rather than an inherent part of who they are. In contrast, “autistic person” aligns with the way other identities are described (e.g., “gay person” or “deaf person”) without implying separation from a core aspect of identity. Research supports the psychological impact of these distinctions: a study by Sinclair (2013) found that autistic individuals who identified with identity-first language reported a stronger sense of pride and self-acceptance compared to those who preferred person-first terminology (Sinclair, 2013).
The neurodiversity movement, which emphasizes the value of neurological diversity, has furthered the use of identity-first language. By affirming autism and other neurodivergent traits as natural variations in human cognition, neurodiversity advocates challenge the view of neurodivergence as a set of deficits. Instead, they frame it as a form of diversity that enriches society and contributes to varied perspectives and problem-solving abilities. This reframing is reflected in identity-first language, which acknowledges that being autistic is as much a part of an individual’s identity as other traits like gender, ethnicity, or sexual orientation.
Identity-first language, then, is not simply a linguistic choice but a political and social stance. By rejecting the pathologizing implications of person-first language, the neurodivergent community asserts its right to define its own identity. This linguistic shift encourages society to move beyond deficit-based views, promoting a more inclusive understanding of neurodivergent experiences.
Linguistic Relativity and Its Implications for Social Policy
The Sapir-Whorf Hypothesis, or linguistic relativity, suggests that the language we use affects our worldview and shapes our interactions. When applied to neurodivergence, this hypothesis implies that pathologizing language not only influences individual attitudes but also affects broader societal structures, including policymaking, education, and healthcare.
The language that defines neurodivergent traits in terms of deficits can lead to policies focused on “fixing” neurodivergent people rather than accommodating and supporting their unique needs. For example, educational policies often emphasize interventions to help neurodivergent students conform to neurotypical standards. This can lead to rigid behavioural programs or therapies, such as Applied Behavior Analysis (ABA), which some autistic individuals have criticized for prioritizing conformity over genuine understanding and acceptance of autistic traits (Milton & Lyner-Cleophas, 2021).
In healthcare, the emphasis on “curing” or “managing” autism reflects a deficit-based approach that influences funding priorities, research agendas, and available services. Programs aimed at “curing” autism may receive more funding than those that support autistic adults in accessing meaningful employment or community-based services. In contrast, policies shaped by neurodiversity perspectives would prioritize accommodations that respect neurodivergent individuals' autonomy and advocate for systemic changes that foster inclusivity.
Shifting language from pathologizing to identity-affirming has the potential to reshape these policies. By adopting inclusive terminology, policymakers could redirect resources toward creating environments that value neurodivergent perspectives. For instance, workplace policies could shift from merely “accommodating” neurodivergent employees to actively recognizing and leveraging their strengths. In education, policies could focus on personalized learning rather than conformity to neurotypical norms, creating a more inclusive approach to learning for all students.
Conclusion: Towards a More Inclusive Language Framework
The language we use to describe neurodivergent individuals is not merely descriptive; it is deeply impactful, influencing self-perception, societal attitudes, and policy decisions. Pathologizing language entrenches harmful stereotypes and fosters societal bias, contributing to a perception of neurodivergent traits as deficits rather than as part of human diversity. By adopting identity-first language, society can take a meaningful step toward affirming neurodivergent identities and fostering inclusivity.
The shift in language, from deficit-based to identity-affirming, reflects a broader cultural movement toward neurodiversity and inclusivity. It calls on us to examine our linguistic choices and consider how they reflect or challenge societal norms. Moving forward, adopting language that affirms rather than diminishes neurodivergent identities can play a role in reducing stigma and creating a more equitable society. Ultimately, the words we choose shape our world, and by choosing words that respect neurodivergent identities, we contribute to a world that values diversity in all its forms.
References
Autism Ontario. (2019). Survey of language preferences in the autistic community.
Cooper, R., & Smith, J. (2018). The impact of deficit-based language on public perceptions of autism. Journal of Social Psychology, 45(2), 150-165.
Gernsbacher, M. A., et al. (2016). The impact of pathologizing language on autistic self-perception. Autism Research, 9(1), 23-32.
Lakoff, G., & Johnson, M. (2023). Metaphors we live by. University of Chicago Press.
Milton, D. E. M., & Lyner-Cleophas, M. (2021). The ethics of applied behaviour analysis. Disability Studies Quarterly, 41(4).
Sapir, E., & Whorf, B. L. (2023). Linguistic relativity and the limits of cognition. Language and Thought Journal, 50(3), 210-230.
Sinclair, J. (2013). Autistic identity: The power of language. Autistic Self-Advocacy Network.
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MAIS - 615
A Neurodivergent Perspective of Damasio’s Emotions and Feelings
Lisa Spencer-Cook
MAIS 615, Athabasca University
Theresia Williams
24 August 2024
Abstract
Antonio Damasio’s Descartes’ Error: Emotion, Reason, and the Human Brain presents an exploration of how emotions and feelings influence human cognition and behavior, with useful insight on how our thoughts and feelings impact our bodies, and our health. Though Damasio’s paper is well written and educational it does lean towards a neurotypical bias and does not factor into account various brain types. The paper by Damasio also uses outdated language to describe what he interprets as the only way to have a healthy brain. While Damasio’s theories provide an understanding of the interactions between human neurology and emotions and feelings, they are exclusively grounded in a neurotypical perspective. This typical brain lens potentially overlooks the diversity of emotional experiences among neurodivergent individuals. This paper attempts to reinterpret Damasio's theories through a neurodivergent lens, incorporating recent research on autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), and other neurotypes to present a more inclusive understanding of human emotional processing.
Neurotypical Bias in Damasio’s Theories
Damasio’s exploration of "biological regulation" in emotional responses hypothesizes that many emotional responses occur in ancient brain structures without conscious awareness (Damasio, 1994). The theory contrasts what Damasio calls "archaic" brain structures, responsible for primary emotions, with evolved "modern" brain structures that are involved in complex, secondary emotions. This view offers insights into emotional processing in a neurotypical brain but overlooks the significant neurological variability among individuals, especially those who are neurodivergent.
Autistic people often exhibit substantial differences in brain structure compared to neurotypical individuals. Research suggests that autistic individuals tend to have a larger prefrontal cortex and an amygdala that develops differently, growing more rapidly in early childhood and potentially shrinking later in life (DeWeerdt, 2020). These structural differences imply that autistic individuals may experience emotions more intensely or differently, challenging Damasio's assumption that primary emotions are processed similarly across all humans. The difference in the experience of emotions and feelings in atypical humans is not anything that is broken about their operating system, it is just different from typical brain types. This difference in brain structure highlights the need for a broader understanding that accommodates the diversity of emotional experiences in neurodivergent populations. It is also of interest to ponder, if what constitutes a feeling to one person is the same feeling in another. A feeling of loneliness, or the emotion of anger may arouse different bodily symptoms from one person to another, much like we cannot tell if the colour blue looks the same from one person to another. It would be of interest to study these emotions in various individuals to ascertain where in the body the feeling lies, and how acutely these emotions are felt in real time.
The Limbic Brain
The limbic system is described as the "emotional brain," and plays a crucial role in moderating between the internal bodily environment and the external social environment and sensory input. Involved in regulating emotions, memory, and arousal, the limbic system acts as a bridge between our physiological condition and our interactions with the world around us. The limbic brain, particularly structures like the amygdala, hippocampus, and hypothalamus, use signals from both the internal bodily environment (such as hormonal levels and visceral states) and external social cues (such as facial expressions and social context) to produce appropriate emotional and behavioural responses. (Purves, 2001).
What is considered "appropriate" in terms of social behaviour and emotional responses is highly subjective and deeply rooted in neurotypical, and often ableist norms. These social norms often dictate how people are expected to respond to social cues, such as facial expressions, body language, and other contextual signals. Autistic individuals, whose neurological processing may differ significantly from the neurotypical population, often interpret and respond to these cues in ways that are perceived as atypical. An autistic person might not adhere to expected social behaviours, like maintaining eye contact or responding to emotional expressions conventionally. This divergence does not indicate a lack of emotional or social intelligence, but rather a different, yet equally valid, way of interacting with the world. For some autistic people eye contact can be painful, and loud, unexpected noises can physically hurt. The limbic system in autistic individuals may process social and emotional information differently, leading to responses that do not align with neurotypical expectations, but are nonetheless appropriate within the context of their unique neurological wiring (Remi, 2017). This processing difference challenges the assumption that there is a universal standard for "appropriate" social behavior and highlights the importance of recognizing and valuing diverse manners of social interaction when studying anything related to the brain.
Damasio emphasizes the role of the limbic system, especially the amygdala, in processing primary emotions like fear and anger, which are emotions crucial for survival (Damasio, 1994). However, Damasio’s interpretation of the limbic system's function is largely grounded from a neurotypical perspective, which may not fully incorporate the complexity of how neurodivergent individuals moderate between their internal world and external environments.
Autistic individuals often exhibit atypical sensory processing, which can affect how they perceive and respond to both internal and external stimuli (Dubois et al., 2016). The limbic system in these autistic individuals may process signals differently, leading to emotional responses that are not aligned with the neurotypical expectations in Damasio’s theory. This divergence can manifest in social interactions that can be perceived as inappropriate, not because their emotional processing is deficient, but because their limbic system integrates sensory information differently. Being aware of these operating system differences is integral to collecting data on emotions and feelings that does not view neurotypical behaviour as the gold standard. As Temple Grandin famously said, “The world needs all kinds of minds.” (Grandin, 2010). To exclude different brain types, or to view them as inferior to the neuro-typical standard in Damasio’s writing does us all a great disservice.
The limbic system's role in mediating between internal and external environments is also influenced by interoception which is the brain's ability to sense and interpret bodily signals. Research has shown that neurodivergent individuals, particularly those with ASD, may have altered interoceptive awareness, which can lead to delayed or exaggerated emotional responses (Riquelme et al., 2016). This awareness of interoceptive differences challenges Damasio’s assumption that there is a singular, "correct" way for the limbic brain to function. Simon Baron-Cohen et al, study this difference in Talent in Autism: Hyper-Systemizing, Hyper-Attention to Detail and Sensory Hypersensitivity, and conclude “The origins of the association between autism and talent begin at the sensory level, include excellent attention to detail and end with hyper-systemizing.” (Baron Cohen et al., 2009)
The neurochemical environment within the limbic system further complicates this mediation process. Neurodivergent individuals often have distinct neurochemical profiles that influence their emotional regulation. Differences in dopamine production in individuals with ADHD or OCD can affect how the limbic system processes reward and punishment signals, leading to impulsive behaviors or heightened anxiety (Dubois et al., 2016). These neurochemical variations add to the need for research to show how the limbic system's role in emotional processing is understood, particularly in the context of neurodivergence.
The Relationship Between Reason and Emotion
Damasio argues that reason and emotion are inextricably linked. According to Damasio, emotions are not just in the background of rational thought; they are integral to it. The theory is that emotions are a necessary tool for making decisions, as they help prioritize information and guide behavior in a way that purely rational thought cannot (Damasio, 1994). This intricate system of decision making happens in the neocortex, where the integration of emotional and rational processes occurs. Damasio's theory is compelling, but again, it is primarily rooted in a neurotypical understanding of how the brain processes emotion and reason. Neurodivergent individual brain structures function differently from the typical, and therefore, they may experience a different relationship between reason and emotion. Autistic people might rely less on emotional cues when making decisions, focusing more on logical or rule-based reasoning which could be due to differences in how their limbic systems interact with the prefrontal cortex, resulting in a different, but no less appropriate, approach to integrating emotion and reason.
The intensity of emotions experienced by neurodivergent individuals, such as those with ADHD or OCD, can sometimes overwhelm the rational decision-making process. An individual with OCD might experience intense anxiety (mediated by the limbic system) that overrides their ability to make reasoned decisions, leading to spontaneous behaviors. This dynamic suggests that the relationship between reason and emotion can vary significantly depending on neurochemical and structural brain differences, a complexity that Damasio's theory does not address. Society needs risk-takers, and entrepreneurs, and people who make decisions that Damasio would not perceive as rational. Rationale could be viewed as a subjective; what works for one human during their lifetime, may not be the preferred way to live for another. “Emotions (like cognitive strategies) are not rational or irrational per se: How (un)reasonable their influence is depends on their fit with the environment.” (Volz & Hertwig
2016, p.101).
The relationship between reason and emotion in neurodivergent individuals also raises questions about Damasio's somatic marker hypothesis. If somatic markers are based on emotional experiences, and those experiences are processed differently in neurodivergent individuals, then the decision-making shortcuts that Damasio describes might operate differently also. Neurodivergent individuals may develop alternative strategies for integrating emotion and reason, which may not align with neurotypical models but are nonetheless effective, and help an individual navigate and regulate their emotions when making decisions.
Sensory Processing and Interoception in Neurodivergent Emotions
Research has shown that atypical sensory processing, including heightened or diminished sensitivity to stimuli such as touch, pain, and proprioception, is now a recognized diagnostic criterion for ASD (Dubois et al., 2016). This atypical sensory processing extends to interoception, as discussed previously, where neurodivergent individuals may have delayed or altered awareness of internal bodily states. An autistic individual might not immediately recognize sensations of hunger or discomfort, leading to delayed or atypical emotional responses to these states. “Between-group interoceptive differences in individuals with and without ASD have been repeatedly demonstrated, with a slight tendency towards hypo reactivity in interoceptive awareness in individuals with ASD.” (Dubois et al., 2016).
The implications of these differences in interoception are significant. Damasio’s theory assumes that emotional responses, particularly secondary emotions, are largely consistent across individuals, based on the assumption that all humans have similar interoceptive experiences. Interoceptive differences can influence how neurodivergent individuals react to and with their environment. Autistic children, for example, are often characterized by sensitivity to tactile and proprioceptive stimuli, which can lead to heightened emotional responses or withdrawal from sensory-rich environments (Riquelme et al., 2016). These sensory processing differences are not just behavioral quirks; they represent fundamental variations in how the brain interprets and reacts to the world, which in turn impacts an individual’s emotional experiences and social interactions, and therefore, decision making.
Genetic Factors
The role of genetics in shaping neurodivergent traits is also relevant to this discussion on Damasio’s work. Recent research has identified certain neanderthal-derived genetic markers are more common in autistic individuals than in the general population (Loyola University, 2024). These genetic factors suggest what we now consider neurodivergent traits may have been advantageous in certain evolutionary contexts, contributing to the survival and adaptation of early human populations. This evolutionary perspective challenges the notion that neurodivergent traits are deficits or malfunctions; instead, they may represent alternative strategies for interacting with the world, shaped by different environmental pressures. The discovery of these neanderthal genetic markers raises important questions about the relationship between neurodiversity and human evolution. If neurodivergent traits were advantageous in certain contexts, they should be considered a natural and valuable part of human diversity, rather than pathologized as disorders. In Neurotribes, The Legacy of Autism and the Future of Neurodiversity, Steve Silberman embraces this concept and acknowledges that, “A growing coalition of educators, clinicians, and disability rights advocates are embracing the concept of neurodiversity.” (Silberman, 2015, p.482). There is still work to do for this diversity to be included in academia and research. It is perhaps possible that the pathologizing of different neuro-types may be directly related to the value that society places on capitalist structures, and whether a person fits into our working model of social norms.
Ableist Assumptions in Damasio’s Work
At the core of this discussion is the issue of ableism, the belief that there is a singular, normal way to have a healthy brain, and that deviations from this norm are inherently pathological or inferior. Ableism manifests throughout Damasio’s work in the assumption that neurotypical brain functions represent the ideal or default state of human experience, thereby marginalizing those who do not fit this mold. When Damasio discusses test subjects he describes them as normal, “When he (Paul Ekman) gave normal experimental subjects instructions on how to move their facial muscles, in effect "composing" a specific emotional expression on the subjects' faces without their knowing his purpose, the result was that the subjects experienced a feeling appropriate to the expression,” (Damasio, p.22). However, there is no description of what normal means in this instance. This one-sided perspective fails to recognize that neurodivergence, variations in brain structure and function that result in conditions like autism, ADHD, and OCD are a natural and valuable part of human diversity.
Historically, the field of neuroscience and psychology has often pathologized neurodivergent traits, framing them as deficits to be corrected rather than differences to be understood and respected (Walker, 2021). This pathologization is a form of ableism, as it implies that there is only one correct way for a brain to function and that those who do not conform to this standard are somehow broken or less than fully human. Such views ignore the rich diversity of human experience and the various ways in which different brain types contribute to the tapestry of human life.
Neurodiversity advocates argue that neurological differences should be recognized as natural variations within the human species, much like diversity in physical traits such as height or eye color (Singer, 2016). From this perspective, neurodivergence is not a flaw or a disease but a fundamental aspect of human variation. This understanding challenges the ableist notion that there is a single, ideal way to be human and that all deviations from this ideal must be cured or fixed. There is no evidence to support the notion that neurotypical brains are inherently healthier or more developed
The ableism inherent in dismissing neurodivergent experiences is not only scientifically unfounded but also socially harmful. Ableism perpetuates stigma and discrimination against individuals who are not allistic. By pathologizing neurodivergence, society reinforces the idea that individuals need correction rather than acceptance. This one size fits all perspective can lead to harmful interventions, such as forcing neurodivergent individuals to conform to neurotypical standards, rather than support that respects the unique needs and strengths of neurodivergent individuals. “Disability theorist Jackie Scully has suggested adopting the term “embodied anomaly” in order to more neutrally define differences and appreciate the subtleties of bodily and social experiences of people with disabilities (Scully 2003). This kind of linguistic awareness provides the groundwork for new understandings of people with disabilities as fully human and capable of all major life activities.” (Kristin Bumiller 2008).
To challenge ableism and promote a more inclusive understanding of human cognition, it is essential to adopt a neurodiversity-affirming perspective, especially in research that relates to the brains operating systems. This inclusive approach recognizes that there are many ways to have a healthy brain and that neurodivergence is a natural part of human variability. Instead of viewing neurodivergence as a problem to be solved within research, we can appreciate divergence as an integral part of the human experience that enriches our collective understanding of what it means to be human. The word normal is used often to describe brain types throughout Damasio’s work and yet, normal is subjective. As Damasio says, “A feeling about a particular object is based on the subjectivity of the perception of the object, the perception of the body state it engenders, and the perception of modified style and efficiency of the thought process as all of the above happens.” (Damasio, 1994). The same could be said of human beings, their perception of what may constitute as normal behaviour or thought patterns will vary and therefore is subjective.
Conclusion: Reconciling Damasio’s Theories with Neurodivergent Experiences
Given the complexity of emotional processing, Damasio’s theories, while insightful, could be expanded upon to fully account for the diversity of human experiences. Damasio’s model of emotional processing, which is based primarily on neurotypical individuals, provides a useful background understanding of the complexities of the brain, but falls short when applied to neurodivergent populations. To create a more inclusive understanding of emotions and feelings, it is necessary to integrate insights from neurodivergent research and experiences. One way to reconcile Damasio’s theories with neurodivergent experiences would be to adopt a more flexible understanding of emotional processing. Rather than assuming a single, universal pathway for emotions, we can acknowledge that different brain structures, sensory processing patterns, and neurochemical balances will lead to a variety of emotional experiences and outcomes. A neurodivergent affirming approach would not only broaden the scope of Damasio's work, but also promote a more inclusive view of human diversity. The more we learn about the variety of human brains and wiring, the more accepting we can be of traits that diverge from what is considered standard.
Additionally, incorporating recent findings on the genetic and evolutionary aspects of neurodivergence can provide a deeper understanding of why these differences exist and how they have contributed to human adaptation. Recognizing the evolutionary roots of neurodivergent traits allows us to appreciate the ways in which differences have been woven into the fabric of human history, contributing to the resilience and adaptability of our species. In conclusion, Damasio’s theories when applied with neurodivergent experiences may require a shift away from ableist assumptions and toward a more inclusive view of human diversity. Acknowledging there is no single or correct way to have a healthy brain, we can better appreciate the full spectrum of human experience and move toward a society that values all individuals.
References
Baron-Cohen, S., Ashwin, E., Ashwin, C., Tavassoli, T., & Chakrabarti, B. (2009). Talent in Autism: Hyper-Systemizing, Hyper-Attention to Detail and Sensory Hypersensitivity. Philosophical Transactions: Biological Sciences, 364(1522), 1377–1383. http://www.jstor.org/stable/40485909 Accessed 24 August 2024
Bumiller, Kristen. (2008). Autism, Gender, and Reimagining Disability. The University of Chicago Press Signs, Vol. 33, No. 4, pp. 967-991. https://www.jstor.org/stable/pdf/10.1086/528848.pdf?refreqid=fastly-default%3A000352ab518a625bfa927da1a4b4709d&ab_segments=0%2Fbasic_search_gsv2%2Fcontrol&origin=&initiator=&acceptTC=1Accessed 24 August 2024
Damasio, A. (1994). Damasio, A. (1994). Emotions and Feelings in Descartes’ Error: Emotion, Reason, and the Human Brain (pp. 127–164). Avon.
DeWeerdt, S. (2020, July 14). Amygdala, The Brain’s Threat Detector Has Broad Roles in Autism. Spectrum News. https://www.thetransmitter.org/spectrum/amygdala-the-brains-threat-detector-has-broad-roles-in-autism/#refsAccessed 18 August 2024
DuBois, Denise., Ameis, Stephanie H., Chuan Lai, Meng., Casanova, Manuel F., & Desarkar, Pushpal. (2016). Interoception in Autism Spectrum Disorder: A Review.
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Grandin, Temple. (2010). The World Needs All Kinds of Minds. TedX. https://www.ted.com/talks/temple_grandin_the_world_needs_all_kinds_of_minds?subtitle=en Accessed 24 August 24, 2024
Loyola University. (2024). Groundbreaking Study Unveils the Role of Neanderthal Genes in Autism. Loyola University News. https://www.loyno.edu/news/jun-07-2024_groundbreaking-study-unveils-role-neanderthal-genes-autism#:~:text=This%20new%20study%20adds%20autism Accessed 18, 2024
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Riquelme, Inmaculada., Hatem, Samar M., & Montoya, Pedro. (2016). Abnormal Pressure Pain, Touch Sensitivity, Proprioception, and Manual Dexterity in Children with Autism Spectrum Disorders. Neural Plasticity. Wiley Online Library. https://onlinelibrary.wiley.com/doi/full/10.1155/2016/1723401 Accessed 24 August 2024
Silberman, S. (2015). Neurotribes. The Legacy of Autism and the Future of Neurodiversity. Avery. Penguin House.
Singer, J. (2016). Neurodiversity: The Birth of an Idea. The MIT Press. http://dickyricky.com/books/psych/NeuroDiversity%20-%20The%20Birth%20of%20an%20Idea%20-%20Judy%20Singer.pdf Accessed 18 August 2024
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Walker, N. (2021). Neuroqueer Heresies: Notes on the Neurodiversity Paradigm, Autistic Empowerment, and Postnormal Possibilities. Autonomous Press. Wiley Online Library. (2016). Children with ASD characterized by abnormal sensitivity to touch, proprioceptive, and painful stimuli. https://neuroqueer.com/neurotypical-psychotherapists-and-autistic-clients/ Accessed 18 August 2024
Yergeau, M Remi. (2017). Authoring Autism. On Rhetoric and Neurological Queerness. Duke University Press. https://www.dukeupress.edu/authoring-auti
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MAIS 602 - Research Journey
Brainstorming a Research Question
My initial thoughts on a research question lead straight to my intellectual passion of Neurodivergence in Females. This is a subject I have been studying for many years, and the reason that I decided to return to school. I have ADHD so for any project, I need to have a keen interest in the subject matter to produce enough dopamine to complete the task.
I would like to narrow down this subject matter into a how an aspect of neurodivergence impacts society. The sub questions that I have the most interest in are the ones that show why society should embrace neurodivergence, lead to a better understanding of neurodivergence, and ultimately destroy stereotypes and biases surrounding neurodivergence.
ADHD and Autism are my primary areas of interest, and these are two diagnosis that are often overlooked in females, which is why I have such a passion around this subject. I note that I do go into this subject matter with some presuppositions as I am neurodivergent and so is my daughter, therefore I have a difficult time with societies current pathologizing of these neuro-types.
A few sub questions that really interest me are:
Is it time for institutions (educational and public health) to stop pathologizing the language around neurodivergence?
Does the pathologizing of language around neurodivergence create societal biases and prejudice?
Why are females overlooked so often in the ADHD/Autism diagnosis process and is it related to the language used in the current DSM?
I have written about pathologizing language in relation to neurodivergence previously, https://lisasc75.wixsite.com/my-site/blog I am of the opinion that when it comes to equity, everything starts with the language that we use. Language, I believe, can be a powerful tool in creating societal biases, and therefore a powerful tool in creating equity.
If I break the questions down further to narrow my research, I am interested in Autistic/ADHD first-hand, lived experience on these subjects, and though I need to counter that with scientific studies, I would like my research to be from the perspective of lived experience with a view to creating a better understanding of neurodivergence as a result.
The result of whittling down the research question, and placing it from the lived experience perspective leads me to a final resulting question of:
How does the pathologizing of language around the topic of neurodivergence impact the lives of neurodivergent individuals?
Assignment 2
Reflective Response to Week 3/Unit 2
My research question is, “How Does the Pathologizing of Language Around the Topic of Neurodivergence Impact the Lives of Neurodivergent Individuals?” After reading and discussing the readings in Unit 2, I would, for now, keep my question as it is. Before submitting this research question, I had done a fair amount of deliberating and the due diligence necessary to commit to this question. My chosen subject area combines my lifelong passion for language, and my overwhelming desire to change the narrative surrounding neurodivergence. While I feel that I have whittled down my research question to one that I am comfortable with, I would, because of the readings, forums, and feedback, change how I carry out the intended research.
I have been studying neuro-divergence for almost a decade now, and it is a hyper fixation subject matter of mine. I am passionate about the subject because my brilliant daughter is autistic, and I have no intention of changing anything about her, but every intention of changing the way that the world views her, and other autistic individuals. I have changed almost every aspect of my life to be at AU and researching this topic. I am a late diagnosed ADHD’er, and academia is completely out of my comfort zone, but if I can do just one good thing for the neuro-divergence movement in this lifetime, it would be to change the language that we use to describe perfectly natural, neurological differences in humans. This does of course mean that I have some attachment to outcomes in my research, and that is something that I will need to address so that my study does not lean towards my bias.
I have often been accused of having a progressive attitude towards neuro-divergence, though I think that is because society in general has an antiquated view of the subject, and that view is perpetuated in the media, and the language that we use to describe it. Though it pains me to do so, I will use the very famous Autism Speaks organization as a negative example as to what wealth and media campaigns have the power to do to an already marginalized, and misunderstood demographic. Autism Speaks is a wealthy charity that continues to spread misinformation and spend money searching for a cure, and they support conversion therapies. Being autistic is a naturally occurring neurodivergence that does not need to be cured, only better understood. The perpetual insistence by Autism Speaks that being autistic is somehow less than being neurotypical has created much harm to the autistic community, and societies perceptions. Much like Paul Bowmans study of Using Theory as Method in Media and Cultural Studies: A Case Study: Orientalism and TV Adverts, I wish to use the Autism Speaks media campaigns to show how the pathologizing language used to describe autistic children in these campaigns has impacted not only societies interpretation of neurodivergence, but how these campaigns have impacted the lives and autonomy of neurodivergent individuals.
The reading Reflexivity in Practice: Power and Ethics in Feminist Research on International Relations by Ackerly and True and the reading describing sensing policy by Wiebe were good reminders of the care that needs to be taken when working with communities outside of ones own. It is interesting to me that these readings of in-depth research on how to be sensitive, empathetic, and cognizant of ethnocentrism, and one’s own ego exist, as though perhaps we have become so detached from the basic principles of human interaction that we need to be reminded of cross-cultural sensitivities. When working with a neuro-divergent community I will need to be sensitive as to how data is collected. I will need to give many feedback options as in person may not suit autistic people, in writing and form-filling may not suit an ADHD’er, and gathering information verbally will not be possible for any non-speaking autistic people. There are many variables to consider and many forms of communication, and giving people options as to how they would like to participate is tantamount to being able to capture the sincerest data.
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Works Cited
Bowman, Paul. (2021). Using Theory as Method in Media and Cultural Studies: A Case Study: Orientalism and TV Adverts. Martial Arts Studies. https://www.youtube.com/watch?v=j3tKg88vyqs
Ackerly, Brooke. & True, Jacqui. (2008). Reflexivity in Practice: Power and Ethics in Feminist Research on International Relations. International Studies Review, Dec. 2008, Vol. 10, No. 4 (Dec. 2008), pp. 693-707 Published by: Wiley on behalf of The International Studies Association. https://www.jstor.org/stable/25482017
Wiebe, Sarah Marie. “Just” Stories or “Just Stories”? Mixed Media Storytelling as a Prism for Environmental Justice and Decolonial Futures. https://esj.usask.ca/index.php/esj/article/view/68333/pdf
Assignment 4.
Summary and Evaluation
In Unit 4 I presented Rebecca Coleman’s chapter Imaging. Coleman’s Imaging is a self-reflective writing focusing on her use of images to contribute to a research project. Sometimes reading theory, academic papers, and methodology can be dry, to say the least, but Coleman’s chapter was a nice change of pace to read something that was written with a distinct lack of ego, was honest, and accessible not only to academics. Coleman is not using images to collect data, but instead using images as part of the research methodology. Images are used to create stories or to gain insight into the participant’s mind. For this research process, there is no strict expectation of outcome, but rather curiosity as to where the images may lead.
In Coleman’s research project, she works with a group of female teenagers. Using various crafts and art materials, Coleman asks the teens to create images of themselves. The participants create images based on how they feel about their bodies. How teenage girls feel about their bodies is of particular interest to me, as I have a soon-to-be teen daughter myself. I recall in one of our forums this semester someone saying that perhaps the way females feel about their bodies has improved since the 1950s. However, I was a teen in the 1990s when Kate Moss and the emaciated “Heroin Chic” look was what we were all striving to achieve. Female beauty standards have, in my experience, only become worse since the 1950s because of Photoshop, Instagram filters, and unrealistic standards and expectations being in our handheld newsfeeds day after day. Add to this a bombardment of marketing, injectables, fillers, and plastic surgery and we have ourselves a crisis for teen girls (and women of all ages.) It will come as no surprise that the collages that the teens created for Coleman were filled with extremely negative self-portraits. These negative images are an indication that the teens' internal dialogue around their bodies is also negative.
Coleman admits that she was not entirely certain what to do once the images were created, and after she had the participants describe the images to each other. Some of the teens became unable to articulate their thought processes verbally. Interestingly, some people can describe feelings impeccably using imagery, but not articulate the same feelings verbally. Also, art in any form is always subjective, and therefore open to interpretation. From a sociological perspective, the act of creating these images in a group setting, and in a safe environment, and discussing self-reflection freely, may produce a favourable result for the participants. The participants in this project would be able to understand that they are not alone with their negative thoughts about their bodies, they would be able to discuss where these negative thoughts may stem from, and therefore, rather than having a quantifiable result, in this brand of sociological research, the method may well be in the madness.
I have mentioned before that when we share our stories, it invites others to share theirs. If we find enough commonality between people’s stories, then that can lead to a theme, and that theme can be used to insight societal change. I wonder if we focus too much on outcomes in academia, and we worry about science so much that we may be missing the original intention. What if we were to allow ourselves the freedom to be open to interpretation with our research? To being as subjective as art in our processes? I don’t know the answer, but I am certainly inspired by the idea of the process being the focus, rather than an anticipated result.
After reading Coleman’s Imaging, I tried to think of times when imagery has had an impact on my life. I realize now that imaging plays a crucial part in my day-to-day existence. I have ADHD and I need to always be doing at least two things at once. I work with my brain, and not against it, and therefore, I find it impossible to just do one thing at any given moment. (Full disclosure, it took me over four decades to stop doing things the neuro-typical way and permit myself to fully embrace the way that my brain works.)
I used to have the romantic notion that I would be the kind of writer who sits at a perfectly polished desk, looking out of the window onto a beautiful landscape, happily typing away, pulling ideas out of thin air, and producing page after page while sipping on coffee. However, back in the real world most of my writing gets done while I’m doing other things. Writing is thinking, so the only time I ever sit at the computer (laptop, while sitting cross-legged on the couch,) is just to type up what I have been thinking about and completing in my mind all day. For example, this original forum entry was written while doing laundry, vacuuming, and cleaning my daughter’s room. This means that should I ever read this entry again after I have written it, the images that it will conjure are of too many “weird” Barbies, Legos, felt-tip pens, and stuffed animals.
While completing my undergrad degree I discovered that I was never going to be the kind of student who could sit still, read a textbook, and absorb the information needed to pass an exam. So, I concocted a system that worked for me. I would put my textbooks on read aloud and I would paint. I never knew what I was going to paint. I would just start painting and listen to my textbooks being read to me. When it came to the exams, whenever questions would come up from the textbook, I would remember the image that I was painting while studying, and that image would prompt the correct answer from the textbook. This was my system.
A friend of mine has synesthesia, she was in her twenties before she realized that not everyone had assigned colours to the letters of the alphabet. And not everyone sees words in colour. She also “sees” music in colour. This brings me back to how imaging can be useful in my work. I have mentioned previously in this course that giving people options as to how they would like to participate is important, and imaging might be something to add to the communication method list. I know a few autistic people who have delayed interoception, and therefore it takes them a while to recognize and verbalize their emotions. Perhaps imaging would be a useful communication tool. People who are non-speaking could perhaps use imaging to communicate their stories. There are many creative options to consider, and this reading was a pleasant reminder that including art and play in one’s research is an option.
Based on the reading, my thoughts about imaging, and how images and words can be intrinsically linked, my verb is Visulinguisting. For example, “I Visulinguisted my way through my undergrad degree.” “I’m just over here Visulinguisting this book.” If nothing else, it is fun to say!
Unit four has been a wonderful reminder that we can get creative with the methods that we use in our research. That the methods themselves can be empowering to the participants involved. Participation in a study should be of use to the participants in the moment and it should not just be about collecting data. Another useful read in Unit 4 was Sand Drawing by Jennifer Green. Green opens her chapter by stating, “Human interactions consist of a creative bricolage of the resources a culture brings to its communicative tasks.” (71). A firm reminder that not all cultures, and not all people can articulate their feelings verbally.
My area of study is writing and new media, and this unit has reminded me of why I chose that particular focus area. Ultimately, I want to shed light on a subject that is important to me and that I believe has value in the world. I think my research has the potential to significantly address how society views a specific topic. I would like to create a podcast centred around interviewing autistic people, discussing the language that has been used to describe their neurology, and whether it has had an impact on the way society has viewed them as an individual. I would like to discuss what they have had to overcome, and I would like these conversations to be free-flowing, and to amplify the actual autistic perspective. To do this, I am going to have to watch several YouTube videos on how to create a podcast, perhaps purchase some equipment and of course find participants willing to be interviewed. I do have a participant wish list, several people that I am aware of within this community that I think have a lot to say on this subject. Eventually, I’d like to have these kinds of conversations around all kinds of topics, race, gender sexuality, but for now, I would like to have conversations about the language used to describe neurodivergence. If I could create a podcast and a blog, the end goal would be a book around these conversations that would be transparent, and not solely my interpretation of the interviews.
I would like to take these podcasts on how language shapes societal views and create a social media site on various platforms, and through those platforms, I would like to create surveys and give people the option as to whether they would like to participate. I could incorporate how they would like to participate, whether they want to leave messages through voicemail or write in long form in private messages, or whether they want to simply answer questions with closed yes or no answers.
It is only now starting to resonate with me how to use interdisciplinary studies to widen the scope of my investigation. Rather than narrowing down the details to study, we can open investigations and dissect the nuances. Eventually, I would like these podcast interviews and any of my research findings to lead to self-esteem workshops that centre around the neuro-divergent community. This unit has reminded me that art and play are acceptable forms of communication and can be tools that allow people to share views and tell their stories in research workshop environments. I am very excited to start the process of my research and to combine my decade-long hyper-fixation on my chosen subject with the ideas from this course and put them into action.
Works Cited
Coleman, R. (2018). Imaging. Routledge Handbook of Interdisciplinary Research Methods. Lucy, C., Fensham, R., Heller-Nicholas, A., Lammes, S., Last, A. & Uprichard, M & E. Taylor & Francis Group. Ch.6. pp. 61-67. https://0-ebookcentral-proquest-com.aupac.lib.athabascau.ca/lib/athabasca-ebooks/reader.action?docID=5447529
Green, Jennifer. (2018). Sand Drawing. Routledge Handbook of Interdisciplinary Research Methods. Lucy, C., Fensham, R., Heller-Nicholas, A., Lammes, S., Last, A. & Uprichard, M & E. Taylor & Francis Group. Ch. 8. Pp. 71-75. https://0-ebookcentral-proquest-com.aupac.lib.athabascau.ca/lib/athabasca-ebooks/reader.action?docID=5447529&ppg=96