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.

Samantha Rogers & Taylor Butlers final paper on Autism illustrated through literature

            DJ Savarese’s poem Alaska and Mary Shelley’s Frankenstein are comparable in that both main characters in the texts struggle with communication.  The creature, made by Victor Frankenstein, is depicted as a monster that is not quite human. Once the creature becomes aware of his hideous appearance, he feels lonely and isolated. Much like the creature, DJ Savarese feels isolated. Although DJ’s outward appearance does not exhibit scary features, his lack of communication skills affect his interaction with others. Due to being autistic, DJ struggles to communicate and sometimes relies on a facilitator to guide him along. Even though DJ has assistance and support from facilitators, he is aware that he lacks support from others. In regards to the creature, Victor Frankenstein can be seen as the creature’s facilitator, as Victor is the only one who truly understands him. However, differently from the facilitator’s mentioned within DJ Savarese’s poem, the creature’s facilitator does not support him. Within both texts, it is evident that communication barriers have an impact on the both creature and DJ Savarese, as they seek to remove themselves from feelings of isolation.

            Mary Shelley’s Frankenstein, is a novel that displays the struggles that the main character, Victor, must face. His creation is much different than the other characters within the book. The creation becomes aware of his repulsive appearance and his lack of communication skills, produces rage. Wanting to learn to communicate like a human, the creation observes a family from the outside. After constantly being reminded of his scary and ugly outward appearance, the creature craves the company of someone like himself. Wanting a female companion to be created for him, the creature seeks Victor with hopes that he will do so. Victor’s refusal to create a female companion leads to escalating aggression within the creature. Isolated and unlike anyone/anything else, the creature uses violence to make his voice heard. The creature’s struggle in being different and unable to communicate with others is comparable to DJ Savarese’s poem Alaska.

            Alaska by DJ Savarese is a poem that illustrates a struggle with communication through the use of metaphor; like Mary Shelley in Frankenstein.  The poem begins with the following quote, “hours of light like heat hibernating, great icebergs hear the cries of the hurt just like they’re trying really, really to be free” (Savarese, 279).  The light could metaphorically mean the light that is inside of an individual with autism, being trapped by society.  This displays how society dehumanizes people with autism and places them into a box. The iceberg metaphor may symbolize facilitators, in which they are able to hear the desire to be free; free to be whom they are. The facilitators are assistive and are able to sympathize with the individuals for who they really are and what they desire most; which in this poem is freedom.  The entirety of the first line may be compared to Frankenstein’s creation and what he endures throughout the novel.  The iceberg in Frankenstein could represent the old Mr. De Lacey.  There are other lines throughout the poem that are representations of the creature in Frankenstein.

While reading the poem, the line, “they try to yearn from freedom but they fear it” linked back to what the creature struggles with in Mary Shelley’s Frankenstein, (Savarese, 279).  The above quote also explains how others can view individuals with Autism and then not understanding their responses.   The word “fear” in the poem means it is the fear of someone not understanding a person with Autism if they are not facilitated in some way.  The word “hurt” also appears quite frequently, which could be interpreted as the hurt/frustration that DJ feels when people judge him or are not patient with him simply because he has Autism. The wording and analysis of the poem coincides with that of Frankenstein’s creation.  The creature feels akin to DJ because of the way he is treated by Dr. Frankenstein, the De Lacey’s, the townspeople, and many more.

            DJ Savarese, an autistic individual, discusses communication in Cultural Commentary: Communicate with Me.  He describes the issues he suffers without his facilitator as well as the proper steps in order to de-escalate from certain situations.   Savarese describes how the people around him do not understand how to communicate with him.  Savarese addresses questions that he is asked frequently such as, “If you don’t know me very well, can you just start talking to me? Yes, but I might act like you’re not there at first. It takes dear, real self-time to tell my breaking-the-barrier heart to quit pounding so loudly, so I can respond” (Savarese 2010).  Savarese’s main point in his commentary is that nobody around him understands his plight.  The type of communication that is being discussed can also be seen in Mary Shelley’s Frankenstein. 

            Frankenstein’s creation, who can be perceived as an autistic individual, who is initially rational, but when communicating his thoughts, he tends to struggle.  The creature feels unhappy and depressed because no one around him understands his wants or needs.  Dr. Frankenstein’s first reaction was awful, solely because he did not know how to address the creature, nor how to communicate with him.  The narrator confirmed that the facilitator does not do everything for them, but that they play a major role in making sure that he is calm. When he is not calm, the facilitator provides comfort and is able to communicate in ways that do not require speaking, like sign language.  In a way, the De Lacey family is the creation’s facilitator.  

Even though the family is horrified by the creature’s appearance and the fact that the creature was touching old Mr. De Lacey, Felix brutally attacks the creature, while Agatha screams; neither of which are positive methods of communication.  Old Mr. De Lacey is the only character that shows no prejudice due to his blindness, he was not able to see the creature’s appearance.  The family poses as the creature’s facilitator even without the awareness of his existence, regardless of the distance, they still helped him in many ways.  The main characters, as well as the townspeople, whom he encounters lack communication because they do not understand his needs.

            In Mary Shelley’s Frankenstein and DJ Savarese’s poem Alaska, communication barriers are evident. Within Frankenstein, Victor Frankenstein creates a creature that is vastly different from the human race and is not what he expected. Its ugly and scary appearance frightens others, leaving the creature feeling angry and isolated. Similar to the creature, DJ Savarese struggles with the ability to communicate in a “normal” manner, due to being autistic. In both texts, individuals are seeking support and to be removed from isolation. Although DJ Savarese has difficulties communicating, he does have support and guidance from facilitators, which is not the case for the creature. The creature, on the other hand, is seen as frightening and is not supported by his creator, which leads to aggressive behaviors towards Victor and his family members. Within both texts, it is evident that communication barriers have an impact on the creature and DJ Savarese, as they seek to find support from others.

Works Cited

Savarese, DJ. “Communicate with Me.” Disability Studies Quarterly, 2010, dsq-sds.org/article/view/1051/1237.

Savarese, Ralph James. “Alaska.” Reasonable People: a Memoir of Autism and Adoption. New York: Other Press, 2007. Pp. 279.

Shelley, Mary. Frankenstein, Electronic Text Center, University of Virginia Library, web.archive.org/web/20110207085418/etext.lib.virginia.edu/etcbin/toccer-new2?id=SheFran.sgm&images=images/modeng&data=/texts/english/modeng/parsed&tag=public&part=19&division=div1.

Honor Pledge: Taylor Butler and Samantha Rogers

Word count: 1278

Final for Amy Rouse; “Label Breaking on Autistic Abilities”

Amy Rouse

04/17/2020

Prof. Foss

Final Paper

Label Breaking on Autistic Abilities

Labels can put pressure on people to either outperform or underperform. With this pressure on those with autism there is a predominant focus on what they can’t do, and how autism has taken away and hidden a child under its grasp. The act of being labeled autistic; might provide slight relief to the parents, but also leaves them wondering who their child is without the autism, how might they form a connection with this child stereotyped to be connectionless? Autism didn’t take away a child, it gave you a unique child who is fully capable of connections, identifying with others, understanding what is being said to them, defying odds. That is an autistic child. 

These connections and accounts are found in Ralph James Savareses’ “Prologue: River of Words, Raft of Our Conjoined Neurologist” from See It Feelingly, in “Perspectives” a poem by Craig Romkema from his collection of poems titled “Embracing the Sky: Poems Beyond Disability,” and Troubleshooting by Selene dePackh. All show those with a diagnosis of autism and call attention to what others think they can’t do while showing that the individuals mentioned can do those things and many more. Here, we will see these stereotypes that are forced upon autistics but also, how they are defying expectations and changing those stereotypes.

Having feelings such as empathy is presumed to be missing from those diagnosed with autism. Savarese shows us with his autistic and nonverbal son, DJ, that feelings and identification are possible for autistic individuals. His son feels “‘character’s feelings”’ so much so that he physically shows them which can be heavy breathing that the character themselves was perceived to be doing within the story, (Savarese, pg. 15). Identification is also mentioned for those with autism as being difficult and absent from them, but DJ “morphs into [Harriet Tubman], so she morphs into him,” (Savarese, pg. 16). Being able to put yourself in someone else’s shoes and feel what they were or might have been at that moment, is a skill to be appreciated and applauded, not one to be ignored because the individual themselves is non-verbal and is assumed to not understand. 

Deficits in emotions are a portion of the DSM-5 diagnosis for autism, but what about those who feel sorrow, who have empathy? DJ is one of them, he does feel emotion so much that he is “ so attuned to the pain that it becomes his own,” (Savarese, pg. 18). Thoughts and opinions on what an autistic can’t do are summed up into broad categories in the DSM, but here we have a child who is not fully categorized within the autism diagnosis aside from his nonverbal form of communication and not wanting physical affection. There is a note made about these “prevailing stereotypes” concerning autism and emotions specifically, (Savarese, pg. 18). With a glimpse into DJs mind, we see how society has made him think of himself. For his graduation, he wanted to walk on stage and shake the Principal’s hand without flapping his arms, though he did not succeed, he “felt proud. I looked great and autistic at the same time. I realized in my own life something I had begun to learn from the books I was reading; simply conforming to the dominant culture is not always a worthy goal,”’ (Savarese, pg. 21-22). Many focus on the negatives and the so-called disruptive behavior that those with autism can perform, but why can’t they focus on the fact they just graduated? Through Savarese and his son, we see how stereotypes are demolished and outperformed, while also embracing who one is and being proud of it and letting the world see that. 

In his poem “Perspectives,” Romkema hints upon the fact that those around him can fix him with “vitamin A” and by “measuring [his] head,” (Romkema). Everyone is always insistent on finding a cure for autism, but no one is taking time to notice what is actually going on in their heads. The label of autism is “freely” made and leaves parents “telling [him] always they knew [he] was there / Inside / And somehow we would find each other, / Connect / The way they could with the sisters and brother,” (Romkema). This embarks on the fact that many perceive those with autism as being disconnected from everyone, from the world and having to provide self-stimulation which can result in arm flapping and sometimes destructive self-harmful behaviors. Romkema calls attention to many stereotypes of autistics while also showing how they become more than those stereotypes and are not limited to them. He notes, “From that little boy so willingly labeled. / But now I can type thoughts, questions, / Responses, / Enter discussions on Shakespeare and / Algebra,” among other mentionings of voting and giving his own opinions not monitored or given for him, (Romkema). Those with autism are able to speak for themselves and prove they can  on a daily basis whether they are deemed verbal or non-verbal. 

Romkema himself is autistic but also has cerebral palsy, which can now explain to the readers why he was lying in his bed and other lines of his poem concerning his body. Connection, thoughts, and other daily actions that neurotypical individuals do look different on an autistic individual, and there is nothing wrong with this. While Romkema’s poem hits a few of these stereotypes, it showcases the brilliance of how someone with autism, laying in their bed doing what other may call “self-stimulation” but actually may be “ponder[ing] new theories while / watching [his] fingers, / Doing Nothing,” (Romkema). “Perspectives” truly gives us a new and recurring perspective: that of the parents, the doctors and other professionals, but also the individual labeled with the diagnosis. He “understood every word” those around him were saying, disproving another stereotype (Romkema). While stereotypes are disproven throughout the poem, it is seen how he can do everything a neurotypical child would be able to do, only in different ways that are not mentioned but can be assumed. 

In the beginning pages of dePackhs book Troubleshooting, a patient is introduced with her ability to look in someone’s eyes instead of looking away. “I’m autistic, but I don’t look down and away like a good autistic; I stare. That complicated my diagnosis for the early years of my life,” (dePackh, pg. 2). Here, we have a very predominant example of focusing on what autistics shouldn’t be able to do, but we also have the example and label of a ‘good’ autistic, one who complies with the diagnosis standards. A whole diagnosis depends on deficits in the individuals, in this case, a deficit on eye contact was not there. This complicated a diagnosis that is plastered with aspects that an autistic individual shouldn’t be able to do. So shouldn’t it be said that she defied the odds, surpassed the expectations, derailed the label she was given? A label she had both physically and metaphorically tattooed on her, was enough for people to assume she couldn’t and should be able to do certain things. “I went up and introduced myself even though making social,” is something she would rather avoid, she does not shy away from things as it would be stereotyped (dePackh, pg. 3). Social situations are often avoided by those with autism, as would be assumed and is in the DSM-5 as a part of the diagnosis.

One very specific notion that is focused on in this first chapter consists of the tone of voice and connecting it to words and their meanings and how they become “callibr[ated]” to where it doesn’t take as long as her normal “‘auditory processing lag,’’’ (dePackh, pg. 7). Not only does this call attention to what is going on inside the brain of someone diagnosed with autism, it shows the readers the difference but the same way everyone understands words. It is like learning something new for a neurotypical individual, sometimes we get it if we have background knowledge (calibration) and sometimes it takes longer to be fully understood, so “taking the scenic route,” (dePackh, pg. 7). Her lag would be something the doctors, teachers, and others would focus on and try to rid her of and cure it, as it is noted later in the chapter in a high functioning autism classroom but also her own mother is trying to cure her autism and “cleanse” her from it, (dePackh, pg. 17). Focusing on her lag proves the point that the negatives and deficits a child may have with autism, is only part of who they are. Positives should be focused on instead because they, just like neurotypical children, can do so much more than they are perceived to. dePackh illustrates this from the few examples covered. Having a connection with your child despite the fact they may be unable to make one, depends also on the parents as well. 

Common perceptions of autism include those that diminish the ability of these individuals. The literary works written by Savarses, Romkema, and dePackh prove that stereotypes put pressure on their children, others, and themselves, but these deficits that appear are solely focused on. There is never an article saying all the things that those with autism can do, only what they can’t do in order to get a diagnosis for their child. Autism presents itself in many ways, and that may be nonverbal but it can also be to look and stare into someone else’s face and be included in social interaction. The analysis offered here in this paper shows that autism is thought of as deficits, but those deficits are being disproved by those diagnosed. 

Word Count; 1,594

I pledge,

Amy Rouse

Works Cited

Depackh, Selene. Troubleshooting: Book One, Glitch in the System. 1st ed., Reclamation Press, 2018.

Romkema, Craig. “Perspectives.” Embracing the Sky: Poems Beyond Disability, Jessica Kingsley Publishers, 2002.

Savarese, Ralph James. “Prologue: River of Words, Raft of Our Conjoined Neurologies .” Seeing It Feelingly, 1st ed., Duke University Press, 2018, pp. 15–22.

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