Tara Platenkamp’s Final Exam: The Difference Between Reading Autism and Reading While Autistic

The demand within autistic communities for autistic authors is high. How could it not be? Every person wants to feel that their voice is being heard, whether it is by their own words being delivered to the public or through a trusted proxy. For most of the existence of the literary community, however, autistic expression has been disregarded and treated as less valuable by scholars and audiences alike. Julie Miele Rodas and Ralph James Savarese provide in their books Autistic Disturbances and See It Feelingly, through alternative perspectives on autistic rhetoric, a comparative analysis on the existence and importance of viewing literature through a neurodivergent lens.

            The first issue that becomes apparent when examining literature with autistic influence in mind is the oversight which happens to the expressions of actual autistic people. Both Rodas and Savarese discuss the general dismissal that occurs towards the alternative literacies that autistic people often use to communicate. For Savarese’s son, DJ, while his main forms of communication—writing and speaking—are themselves not unusual, the manner in which he is able to communicate is. Text-to-speech communicators are strange, if you’ve never been around someone who uses one, and many people become uncomfortable around synthetic voices, as well as the inevitable delay that occurs when a person has to type instead of speaking aloud. While not always intentional, it is not uncommon for neurotypical, able-bodied people to assume that because of his disability DJ lacks intelligence. The end result is that people like DJ, who struggle to communicate in the typical way, have their words and their thoughts devalued. Rodas describes the manner in which “even autism-positive literary scholars are prone to explain autistic verbal practices as literary deficits”, neatly summing up the way which even disability scholars can (whether maliciously or not) overlook or misunderstand the intent behind autistic language, applying a neurotypical film over an autistic person’s words to make them more palatable (Rodas 182). Not only this, but the existence of autistic authors is often overlooked or deliberately ignored due to a lack of clear evidence supporting the neurodivergence of accredited writers.

            One of the most problematic assumptions that can be made about literature of merit is that none of it was written or influenced by autistic people. Rodas seeks to destroy this notion of neurotypical-until-proven-neurodivergent by not only identifying patterns of autistic thought and expression throughout the literary canon, but also attempting to remove the blinders of what counts as autistic language. Autistic people, Rodas points out, “embrace an infinite variety of varieties and expressive modes”, rather than being confined by strict rules that determine an exact criterion for autistic expression (Rodas 183). In fact, Rodas encourages “reaching” for examples of autistic influence in literature for the sake of seeking out intersectional connections between autism and all other walks of life (Rodas 192). She outlines that many forms of autistic expression can seem innocuous to the uniformed eye; listing, repetition, wordplay, silence, and more all hold a place in autistic artistic rhetoric. It is only once these motifs are ascribed to autism that they begin to carry a different weight. Rodas references the lists that appear in Jorge Louis Borges’ “The Analytical Language of John Wilkins” with the purpose of pointing out how “Borges’ tongue-in-cheek inventory speaks to both the apparent worthlessness of discretionary rhetorics as well as to their potential for intelligence, invention, even humor” (Rodas 188). The reason why literature is usually assumed to be written by neurotypical people is because autistic expression is presented as less functional and meaningful. By presenting literary works that exhibit motifs which can be related to autistic rhetoric, Rodas removes the boundary between notable works of literature and works of literature written by autistic people. Not only does Rodas disregard the invisible barrier of ableism, but she also shows that elements of autistic rhetoric and expression exist outside of the vacuum of literature written about and by autistic people. It is through this acknowledgement of autistic expression holding not only value, but also normalcy, that neurodivergent rhetoric is moved from the theoretical, othered position, to one which may encourage and be engaged with by neurodivergent indivudials.

            The biggest distinction to consider when discussing the examination of literature through a neurodivergent lens is the difference between reading autism and reading while autistic. Rodas’s work focuses on reading literature while searching for autistic influences; Savarese, comparatively, illuminates the ways in which stories that are superficially unrelated to the topic of autism can affect a person who is autistic, both the good and the bad. Neither of these perspectives is problematic, but are, rather, two of the necessary viewpoints when tying autism to literature. Stories have two fundamental parts: the author, and the audience. By accounting for autistic influences both in how literature is formed and how it is received by autistic people can the full scope of neurodivergent presence literature be understood. Without both these perspectives being utilized, a foundational pillar of disability studies is lost. In Savarese’s prologue, DJ says that he “‘feel[s] characters’ feelings’” and is described as “screaming at the top of his own oxygen-depleted lungs” in response to a character from Jon Krakauer’s Into Thin Air dying. This intense empathetic response might seem unimportant in regards to the novel as a whole. However, DJ’s response speaks to a greater connection between themes of misunderstanding and abuse in literature and those that appear in the autistic community. DJ is upset by the death of Rob Hall not only due to his empathetic nature, but also the experiences he himself has gone through as an autistic person. Savarese explains the feelings of “extreme helplessness” portrayed in the novel that DJ identified with, as a disabled child in foster care left without any way to communicate (Savarese 21). The identification and understanding of autistic influence in literature, as Rodas does, are necessary for furthering an awareness of autistic rhetoric, but Savarese’s accounts of his son explains why encountering and encouraging neurodivergent voices matters. Despite the fact that reading can be a trial for DJ, Savarese describes the intense way that DJ “identified” with stories, and encountering such emotional trials and overcoming them eventually gave to way to a greater grasp over his own emotional state (Savarese 15). DJ, a writer in his own right, suggested that “real change is only possible when different thinkers free people to open their eyes to new ways of being”, a direct proponent of how vital it is for autistic rhetoric to be acknowledged not only within literature, but about literature.

            Autism, as well as any form of neurodivergence, is not a simple condition with easily defined borders that can be understood at a glance. However, it is because of the vast number of possible expressions of autism that make recognizing and celebrating autistic rhetoric so important. Rodas and Savarese’s writing encompass the two most foundational parts of understanding literature through a neurodivergent lens by enumerating and examining the ways in which autistic rhetoric affects established literature, and the experiencing of literature by autistic people. The cycle of author to reader that their books provide allows for a fuller understanding of autistic rhetoric in a way that does not merely encounter neurodivergence but embraces it and allows it to thrive.

Word count: 1211

Sources:

Rodas, Julia Miele, and Melanie Yergeau. Autistic Disturbances: Theorizing Autism Poetics from the DSM to Robinson Crusoe. University of Michigan Press, 2018.

Savarese, Ralph James. See It Feelingly: Classic Novels, Autistic Readers, and the Schooling of a No-Good English Professor. Duke University Press, 2018.

Mackenzie’s Final Paper

Mackenzie King

ENGL 384: Section 01

Dr. Foss

28 April 2020 

The Autistic Voice

Defining autism causes much debate among self-advocates and medical professionals. The Oxford English Dictionary defines autism as “a condition which has its onset in childhood and is marked by severely limited responsiveness to other persons, restricted behaviour patterns, difficulty with abstract concepts, and usually abnormal speech development” (Rodas 9). The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) gives an even more unclear definition of what it labels as “Autism Spectrum Disorder” as it gives medical professionals diagnostic criteria in the form of rigid categories. The problem with these diagnostic criteria is that autism presents itself differently among individuals. Some people with autism will show very little or no verbal communication while others may have perfect verbal skills. Many of the definitions or attempts to label autism come from sources who do not fully understand the autistic experience. Ari Ne’eman’s “Dueling Narratives: Neurotypical and Autistic Perspectives About the Autism Spectrum” and Julia Miele Rodas’ Autistic Disturbances: Theorizing Autism Poetics from the DSM to Robinson Crusoe demonstrate how damaging labels are continuously promoted as people with autism are placed in the background of these discussions.

   Autistic writers will typically describe autism by feelings, experiences, and practices instead of through rigid categories. Then, autism is “what it feels, does, experiences, and says” (Rodas 10). This puts the autistic person at the center of the definition, not just categories of diagnostic criteria. Rodas notes that autism scholars will usually resist strict definitions of autism because no one truly knows what autism is. While autism is likely physically located in the body, there is no blood test or specific genetic marker that signifies autism. In this respect, the autistic body cannot be separated from the autistic voice. In “Dueling Narratives: Neurotypical and Autistic Perspectives About the Autism Spectrum” Ari Ne’eman states that “in a society that values equality as a means of social justice, the idea of each individual created equal is often misinterpreted as each individual created the same” (Ne’eman). Self-advocates continue to strive for support and acceptance for people with autism in society. Disability is thought of as a social construct. According to this social model of disability, the label of disability then reflects how an individual is able to function in a specific environment and is then not related to any intrinsic characteristics related to the individual. This means thant people labeled as having a disability are being defined by their relation to the rest of society, taking the ability to form an identity away from these individuals.

  When it comes to discussions about autism, people with autism are generally not in the center of the discussion. Films like Autism Every Day (2006) furthers the idea that autism happens only to people surrounding the person with autism. This places all of the power for form identity in the hands of non-autistic hands and not in the individual. Lauren Thierry, the producer of this film, criticized President Bush for taking a photograph with a young man with autism who scored repeatedly during a high school football game and received a lot of media attention because of his talent. Theirry stated that this sent a message that people with autism will be okay as long as they can find a certain skill in which they can excel; however, she had also told the parents depicted in her film not to provide any type of therapy for their children or maintain their homes in the few days leading up to filming. This then promoted the idea that autistic children can be seen more as tradegies, further encouraging the notion that autistic children will fall into one of two categories: tragedies or prodigies. This is not an accurate representation of the reality of most people with autism, but films such as Thierry’s Autism Every Day are motivated by fundraising instead of accurate portrayals of living with autism (Ne’eman). 

Jenny McCarthy further promoted the idea of autism as pathological with her memoir Louder Than Words (2007). In her book she portrays autism as a tragedy when her son receives his autism diagnosis. Actions she previously thought were cute soon became signs of autism and represented something she now views as tragic. Because of her high profile she became popular in autism discourse, furthering the idea of autism as pathology. The describes learning about her son’s autism by saying that all of the “things I’d thought were personality traits were in fact autism characteristics, and that was all I had. Where was my son, and how the hell did I get him out?” (McCarthy 66 qtd. Rodas 16). Again, this reaction illustates the inability to look at the individual. Jenny McCarthy’s entire view of her child is altered by his diagnosis. Her son is not trapped by his diagnosis, it is a part of his identity. When the people around someone with autism try to create a label or define who that person is based on the diagnosis, it takes that person’s voice and individuality. Autistic people, just like people who do not have autism, are able to express themselves in a variety of ways and through a variety of identities (Rodas). 

  The diagnostic criteria present austism as something that is categorical and easily defined, but that is not the reality for many people with autism. Autism affects people differently. These categorizations make it easier to try and place people within the label of autism, but this then takes the voice away from those individuals. Organizations, such as Autism Speaks, or films such as Lauren Thierry’s Autism Every Day continue to set the tone that autism is a condition that needs to be treated. These are not accurate representations of life for many autistic individuals and futher promote the labels given to autistic individuals from non-autistic sources who do not truly understand the autistic experience. Self-advocates are correct in their pushing to be at the center of discussions on autism, not merely placed into the background while non-autistic people place labels and make assumptions about what it means to be autistic. 

Word count: 1004

I hereby declare upon my word of honor that I have neither given nor received unauthorized help on this work

Meg’s Final Analysis on the Birth of Frankenstein’s ‘Creation’, and Ableist Parent’s Autism Diagnosis Experience

Earlier in the semester, we focused quite a bit on the character of Victor Frankenstein, the titular character in Mary Wollstonecraft Shelley’s Frankenstein. We discussed how Victor could represent a character with depression, schizophrenia, or a number of other possible invisible disabilities. We touched on his ‘creation’ from time to time as well, in associate with Rosemary Garland Thompson’s Introduction: From Wonder to Error—A Genealogy of Discourse in Modernity” from Freakery: Cultural Spectacles of the Extraordinary Body, among other theories. But I think that we should circle back and revisit Dr. Frankenstein and his creation now that we have learned more about autism. By analyzing the passage in which Victor Frankenstein experiences the ‘birth’ of his ‘creation’ it is impossible to ignore the way in which his experience coincides with the depiction of   the experience of an ableist parent, such as Jenny McCarthy, discovering their child’s autism diagnosis, outlined in Julia Miele Rodas, “Introduction” rather succinctly, which shows us just how far we have left to go in deconstructing the rampant ableism in our own society.

            Shelley begins Dr. Frankenstein’s experience, at the moment the creature opens his eyes, “How can I describe my emotions at this catastrophe, or how delineate the wretch whom with such infinite pains and care I had endeavoured to form? His limbs were in proportion, and I had selected his features as beautiful. Beautiful!” (Shelley 37). It is clear that up until this moment, throughout the two years he had been working on his ‘creation’, he never once thought of him as anything less than his own beautiful summation of his blood sweat and tears. His ‘creation’ was exactly as he was intended to be, with, “limbs […] in proportion” and “beautiful” features (37). This mirrors what a parent typically sees in their child(ren): the most beautiful thing(s) they have ever created. We see similarities in Jenny McCarthy’s depiction of her son in the doctor’s office just before his diagnosis, as written in her book Louder Than Words, “Evan ‘had taken those ear cones the doctors use to look inside your ears and had made the most perfect row lined up across the room’”. McCarthy goes on to detail that she found this behavior ‘”cute”’ (Rodas 15). McCarthy’s choice of the words “perfect” and “cute” illustrate that prior to her son’s diagnosis, she, like Dr. Frankenstein and his ‘creation’, saw no problem with her child. The similarities do not stop here.

            Within the first line of this passage, the reader is aware of Dr. Frankenstein’s flurry of emotions upon witnessing the birth of his ‘creation’. His use of the words “catastrophe” and “wretch” illustrate the change in the doctor’s perception of his ‘creation’ from “beautiful” to seemingly grotesque. Frankenstein continues, “The different accidents of life are not so changeable as the feelings of human nature. I had worked hard for nearly two years, for the sole purpose of infusing lie into an inanimate body. For this I had deprived myself of rest and health. I had desired it with an ardour that far exceeded moderation; but now that I had finished, the beauty of the dream vanished, and breathless horror and disgust filled my heart.” (Shelley 37). In this passage Dr. Frankenstein acknowledges his change in feelings toward his ‘creation’. He, not unlike a parent, has put his all into his ‘creation’ for years until this point. But, the moment his ‘creation’ opens his eyes he no longer recognizes him as the “beautiful” being he was moments before.

            This, again, mirrors Jenny McCarthy’s own ableist reaction to the diagnosis of her son, “’Everything I had thought was cute was a sign of autism’” (Rodas 15). As we’ve just read, moments earlier McCarthy had seen her son’s behavior as “cute”, and she has now dehumanized them into strictly symptomatic behaviors, or as Rodas puts it, as “autism’s antihuman identity” (Rodas 16). McCarthy goes on, “The things I’d thought were character traits were in fact autism characteristics, and that was all I had. Where was my son, and how the hell did I get him out?” (16). McCarthy’s inability to see her son, and insistence upon seeing his once “cute” “character traits” as non-communicative autonomic compulsions that he needed saving from, illustrate the dehumanization of her own son due to her ableist blinders. This is further exemplified by McCarthy’s interaction with her own doctor, who states that her son “is still the same boy you came in here with”, and her response “No, in my eyes he wasn’t,” (16). Much like Doctor Frankenstein no longer sees his ‘creation’ as the same “beautiful” being that he had known for years, neither does McCarthy see her own son as the “cute” boy that she had raised until this point.

            Mary Wollstonecraft Shelley’s Frankenstein is chock-full of material to analyze through the lens of Disability Studies, from the Doctor’s many possible invisible disabilities, to the various possible physical and invisible disabilities that his ‘creation’ could be seen to represent. But perhaps more interesting, at least to me, is the way in which the interactions between the Doctor and his ‘creation’ or either character and the outside world, can be seen to represent interactions between the disabled community and the non-disabled community. How do we see things differently today, or do we? One example can be found in the problematic way that many ableist parents fear the diagnosis of autism for their children as most parents would fear a deadly illness. Which is ironic, given that this same fear pushes many to avoid modern medical treatments such as vaccines, under the misguided notion that they may cause autism; literally risking their children’s lives to avoid an autism diagnosis. This best illustration of this dehumanizing fear is Jenny McCarthy’s experience of the diagnosis of her son with Autism, and the succinct reflection of that experience within Dr. Frankenstein’s experience of witnessing the birth of his ‘creation’, which shows us that although we’ve come a long way in terms of we still have a very long way to go in dismantling the ableism in our society.

Word Count = 1014

Works Cited:

Rodas, Julia Miele, and Melanie Yergeau. Autistic Disturbances: Theorizing Autism Poetics from the DSM to Robinson Crusoe. University of Michigan Press, 2018. < https://www.dislit2020.chris-foss.net/blog/readings/>

Shelley, Mary Wollstonecraft, and Susan J. Wolfson. Mary Wollstonecraft Shelleys Frankenstein, or, The Modern Prometheus. Pearson Longman, 2007.

Thomson, Rosemarie Garland. Freakery: Cultural Spectacles of the Extraordinary Body. New York University Press, 1996. <https://www.dislit2020.chris-foss.net/blog/readings/>

I hereby declare upon my word of honor that I have neither given nor received unauthorized help on this work.

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