Sammie Meyers’s Final Exam Essay: “Autism and Life”

Samantha Meyers

Dis and Lit

05/02/19

Word Count: 1,242

Autism and Life

         In many instances, there are individuals who insert their opinions into outside narratives. While many have good intentions behind their desire to research, many individuals have difficulty realizing that certain things are not within their realm of understanding. Stuart Murray’s Autism and Melanie Yergeau’s “Introduction: Involution” from Authoring Autism”, show the dangers of depicting autism as a condition and how the abled speak for the disabled without completely understanding their experiences.

         Murray provides many details on why the public should be careful about how they depict autism and individuals with autism. The ways in which the medical community presently classifies autism is problematic. Murray states that, “the idea of improvement in the future automatically characterises autism in the present as first and foremostly a ‘problem’ and something that requires change” (9). This mentality is dangerous and implies that the present doesn’t matter if there will be a cure for autism someday. It can also be connected to how people see the everyday life of an autistic individual. When people demonize the concept of autism, Murray says that, “it also makes the idea of ‘everyday autism’, the daily business of a life lived being autistic, one that is difficult for any individual to sustain or justify” (14). The autism experience is one that many people believe individuals suffer from. Many don’t believe that autism is enjoyable for the person who has it and, in fact, the public tends to believe that, “suffering is integral to the manifestation of the condition” (21). The continual use of ‘condition’ perpetuates the stigmatizing belief that autism is something that a person suffers from.

         There are many dangers of ‘curing’ autism. Some people believe that autism is a separate entity stuck inside someone that can be flushed out through many different means. Murray says, “where those that champion curing are definitely in the wrong is in their idea that somehow the autistic and the human can be kept apart, and that to eradicate the former is to liberate the latter” (109). Not only does this dehumanize autistic individuals, but the people who think that they are freeing their loved one from autism are strongly misguided. Murray references another author and says, “to ‘cure’ someone of autism […] would be to take away the person they are, and replace them with someone else” (102-103). There is a large discussion about the ways in which people want to find a cure so that they can find the real individual within their loved one. This mentality is dangerous since this shows that people cannot accept autistic individuals without fixing them in some way. Murray tries to understand individuals who believe in this mentality and says, “maybe those who believe in curing will come to say that they actually mean ‘changing’, eliminating the worst features of autism to preserve the best, and that ameliorative treatment programs may come from this” (109). This, of course, is impossible and only serves to dehumanize autistic individuals when people aren’t able to accept them unless they are able to eradicate the horrible parts of the disability.

         Able bodied individuals tend to place a hero trope on people with disabilities especially individuals with autism. There is this belief that an autistic person cannot exist unless they have triumphed over their disability and has essentially assimilated into society. Murray shows this when he says, “the weariness comes from having to experience endless narratives in which autism, seen as a tragedy, is the subject of ‘heroic’ overcoming” (103). Media and news sources alike show this hero trope implying that the public cannot publicly accept a neurodivergent or autistic individual into society unless they overcome their disability through a heroic act. Time and time again, authors use this trope in many of their stories to display a disabled individual as a champion of their disability. This brings Melanie Yergeau’s personal experiences to the surface. Yergeau states that, “Media accounts of autistic people communicate the sensationalism of savant-beings who are at once extraordinary yet so epistemically distant and critically impaired” (2-3). Not only do people, especially autism parents, impose their own opinions onto autistic individuals, they make it known that this diagnosis is a horrible tragedy that they wish hadn’t happened to them. Yergeau says that, “many parent narratives echo this line of thought and speak of autism as something happening to them, as though their entire family had been struck by lightning” (7). This reaction to a diagnosis is all too familiar and, although the public has improved, there are still people who react like this. They believe that the person they could have known is lost within their autistic child or friend.

Within the heroic trope, both Murray and Melanie Yergeau mention the problematic ways that neurodivergence is displayed in the media. Murray gives reasons as to why Rain Man is a problematic representation of neurodivergence while Yergeau mentions it in passing and mentions other media representations that are improvements. Murray says that, in the movie, Raymond displays talented abilities which depicts autism as a ‘spectacle’. He says that, “this sense of performance, heightened by the fact that Hoffman was performing of course, connected autism to an idea of behavioral display” (75). When this movie shows Raymond essentially ‘performing’ and ‘rising above’ his disability, this shows that individuals with autism have to perform in order to be accepted by the general public. They have to suppress their true selves.

         The general public, as well as loved ones, like to generate inaccurate narratives for individuals with autism. Melanie Yergeau, an autistic individual, experiences this firsthand. She shows the ways in which people have projected their own definitions of autism onto her without much description about herself. She says that, “instead, my body is reduced. Erased. Medicated” (13). This goes back to the issue of overmedicating neurodivergent individuals in an effort to find a cure. Not only do abled individuals publicly push their own opinions of individuals with autism to the forefront, they do so while putting down the very people that they are pushing. Yergeau states that in her experience, “[they] are conditioned that [their] selves are not really selves, for they are eternally mitigated by disability, in all of its fluctuations” (10). So, essentially, she is saying that caretakers and the general public make autistic individuals feel that their disability will always interfere with them as a person. She goes on to talk about involuntary logics as people who are under the impression that autistic individuals cannot make decisions for for themselves so they do it for them. Yergeau talks about how these ‘logics’ forcibly removed her from high school and institutionalized her. She says that these people, “are the logics of overmedication, eugenic future, institutionalization; they are the logics that narrate shit smearing as brain gone awry” (9-10). This involuntarity notion encourages people to make decisions for autistic individuals based on the assumption that these individuals cannot voluntarily do so for themselves.

         Stuart Murray and Melanie Yergeau show the dangers of depicting autism as a condition both through research and personal experience. While the public still has varying opinions of autism, there are many who are cognizant of their impact on the community and the ways in which they can help. There is still a long way to go with showing people the autism community’s agency, but these two writers helped to display the dangers of handling autism the wrong way even while doing so with good intentions.

Bibliography

Murray, Stuart. Autism. New York, 2011.

Yergeau, Melanie. Introduction: Involution from Authoring Autism. n.d. PDF.

Rebecca Young’s Final Paper

Rebecca Young
Dr. Foss
ENGL 384
May 2, 2019

Of Mice and Misrepresentation: Infantilization and the “Idiotic Autistic” in John Steinbeck’s Of Mice and Men

It is undoubtedly clear that literature in all forms acts as a vessel for societal beliefs and perceptions to be communicated through. Not only do the stories and characters in literature mimic those we see in real life, though, but the literary tales influence and reinforce societal beliefs as well. Thus, it is crucial to critically examine such works in order to gain an understanding of both the society reflected within that literature and the potential ways the literature can influence society on its own. This is especially true when considering works which discuss such critical topics as disability and its place in society. In the particular field of disability studies, the reinforcement of societal perceptions is key to any discussions of literary representation. We must, then, analyze such literature closely in order to best understand the roles of literary works in forming and perpetuating these perceptions. This can be done in many ways and for countless works of literature, but the case this essay will be examining is that of John Steinbeck’s Of Mice and Men, focusing on the representation of autism in Lennie’s character. By analyzing Of Mice and Men’s Lennie through the lens of autism, we can recognize and problematize the prolific stereotype of the burdensome “idiotic autistic,” especially in the context of infantilization.

Before critically analyzing the kinds of representation of autism seen within a text, one must first analyze whether or not autism is represented in the text at all. As autism is found across a broad spectrum, and is not always easy to diagnose, this can be a difficult process. Additionally, it can potentially become problematic to diagnose fictional characters with autism when it is not a diagnosis specifically given to them within the work. In doing so, one risks making decisions based on assumptions or stereotypes, which can then perpetuate negative beliefs of autism and disability in general. When done carefully, however, and with the understanding that one’s analysis can never be concrete, analyzing literary characters through lenses of autism can allow for an ultimately beneficial reading of the text. In the case of Steinbeck’s Of Mice and Men, we see autism represented in the character of Lennie, one of the story’s two main protagonists.

Lennie’s character is clearly represented as disabled throughout the duration of the book; by reading him through a more specific, targeted lens, however, he can be seen as a distinctly autistic character. While the diagnosis of “autism” was not seen in the society in which Of Mice and Men was set, we can take contemporary knowledge of the autism spectrum and analyze Lennie in its context. In doing so, several of his specific character traits align with diagnoses of autism, such as his sensitivity to touch, challenges focusing on and following conversations, and difficulty acting in social situations. From this information, it is reasonable to analyze Lennie as a character with autism.

By reading Lennie as autistic, the entirety of Steinbeck’s book can be more effectively analyzed in the broader context of disability studies; this is specifically applicable to disability studies when considering the stereotype of the “idiotic autistic.” Throughout the book, Lennie is considered an “idiot” (among other terms) by essentially every other character he encounters. Because his communication and socialization skills are different from those of the “normal” characters within the book, he is perceived by others as simply incompetent. This perception of autistic individuals as “idiots” is an incredibly harmful stereotype when evaluated within the greater context of disability studies. Not only does it define the person by a single characteristic (their disability), but it further extrapolates assumptions about their existence based on this single trait. Thus, instead of viewing autistic individuals as whole people, they are diminished to something less human entirely, and automatically devalued as members of society.

In addition to being dehumanized as an alleged “idiot,” Lennie’s character is incredibly infantilized by those around him. For the same reasons that he is considered an “idiot” by other characters, he is treated like a dependent child. This further reinforces the belief that disabled individuals are burdens to those around them, another prominent stereotype of the disabled community. These are stereotypes which both reflect the society in which Steinbeck was writing and the society in which we currently live, as we can still see these beliefs in contemporary treatments of disabled individuals. In all of the aforementioned cases of stereotyping, individuals with disabilities are looked down upon as lesser, unintelligent, and wholly dependent beings. This is especially true for those with autism or intellectual disabilities and is understandably problematic, especially when considering the influence literature has over societal beliefs.

As stated previously, literature both mimics the society in which it was written and influences the society in which it is read. Thus, the treatment of a single character in Of Mice and Men has the power to affect the treatment of real individuals in the world around us. When characters like Lennie are viewed as pitiable and burdensome idiots, other individuals with autism are more likely to be seen this way as well, further reinforcing this detrimental cycle of stereotyping the disabled community. While it was “acceptable” to view disabled individuals in such a light during the 1930s, when this book was written, the story carries implications for our current and future societies as well. Without problematizing such harmful views like those seen in literature, there are no obstacles to these views being manifested and perpetuated throughout the rest of society. In a book so highly praised as “classic literature,” this is even more dangerous for the disabled and autistic communities.

The implications which literary representation has for the broader, contemporary disabled community are influential to say the least, and concerning when seen perpetuating problematic stereotypes like that of the infantile “idiotic autistic.” In examples of literature such as Of Mice and Men, this is even more detrimental to the disabled community, as this literature is considered noteworthy, valuable, and even progressive by many readers throughout the world. With this in mind, then, we must be willing to problematize such literary representations of autism. Otherwise, the disabled community will continue to suffer as a result of such societal understandings of individuals with disabilities, and our world as a whole will suffer until all individuals are accepted and valued as equal members of society.

Word Count: 1,059

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

Bibliography

Chaloupka, Evan. “‘Intersubjectivity and Narrative Technique in Of Mice and Men and ‘Johnny Bear'”.” Journal of Narrative Theory, vol. 47, no. 3, 2017, pp. 403–26.

Hacking, Ian. “Autism Fiction: A Mirror of an Internet Decade?” University of Toronto Quarterly, vol. 79, no. 2, 2010, pp. 632–655.

Hall, Alice. Literature and Disability. 2016.

Loftis, Sonya Freeman. Imagining Autism: Fiction and Stereotypes on the Spectrum. 2015.

Marlowe, Mike, and George Maycock. “Using Literary Texts in Teacher Education to Promote Positive Attitudes Toward Children with Disabilities.” Teacher Education and Special Education, vol. 24, no. 2, 2001, pp. 75–83.

Miller, Donna L. “Literature Opens Doors for All Children.” Phi Delta Kappan Magazine, vol. 94, no. 4, 2012, pp. 28–33.

Steinbeck, John. Of Mice and Men. Modern Library, 1937.

The Network of Thought of Dax and Baggs

April Wobken

ENGL 384

Foss

4/26/2019

                                      The Network of Thought of Dax and Baggs

Selene dePackh’s Troubleshooting articulately brings the message of the Autistic interpretation that Amanda Baggs conveys in her piece, Up in the Clouds and down in the Valley. Baggs describes the typical Autistic interpretation as the absence of something important; the absence of speech, of language, of thought, of movement, of comprehension, of feeling, and of perception.  Though there is an absence to most perspectives, Baggs insists that there is more to it than simply an absence, rather a different angle. Troubleshooting’s Dax represents Baggs’s Autistic perspective in the following scenes: Dax’s perception of language into patterns, Dax’s struggle with heavily structured tasks, and when describing other’s perception of her due to her Autism.

Baggs describes her process of understanding her surroundings as starting with sensory impressions repeated long enough for her to become deeply familiar with them. Once the familiarity is established, the concept forms into patterns that evolve into a more complex network of patterns. This method applies to her understanding of sensory impressions and language. She reflects about first having to match words to their responses before she was able to understand the meaning of the words and why (Baggs). This understanding of a pattern is the dominate way she and Dax both describe understanding language. When first interacting with Chill, Dax describes the process of unpacking his words, “He’d been talking for a few before the first information made it to the appropriate parts of my brain…His sounds and expressions were coming into focus. He’d begun rephrasing what he’d probably already said…I was starting to get him synchronized” (dePachkh 3-5). Dax does not fully understand the words Chill speaks until she becomes familiar with the pattern. Even though language is universal, speech has a pattern and people must adapt and get used to each individual’s style, people all do this without thinking most of the time. Unless someone may have an accent or different dialect, the adjustment period might be a bit more difficult. The Autistic cognitive process affects her socializing, taking her at a fundamental level with each interaction, having to pay close attention to words without even understanding their meaning and ciphering through the absence of information. Dax describes herself as having to do this adjustment for each new interaction until she adjusts, she will often miss many important details of a conversation. The process is very exhausting for her and forces her to be very alert when trying to communicate effectively with others.

Baggs’s describes the autistic experience of being in the valley and in order to understand other people she must climb mountains and reach the sky, this process does not guarantee her a similar experience to those in the sky once she gets there. “It’s hard for me to climb that mountain all of the time though, so they are more rarely my experiences than those of others. Still, so many people from the mountain describe the valley only by what is not there, and that is not anywhere near a thorough enough description” (Baggs). This different experience is shown by how the contrast of Petra’s experience of Dax compares to Dax’s own experience of herself. When she first confronts Dax about having Autism she comes from an angle of doubt, saying that she does not see Dax as disabled and that Dax’s tattoo is fake. There is a stereotype that autism looks a certain way and like most unaware people, Petra seems to think that Dax is not “autistic enough” (dePackh 78-79). When Petra spends more time with Dax she realizes how much help Dax needs to function on the level that society requires of her and helps Dax complete her To-Do List. Once Petra leaves Dax struggles with her task management and is only able to catch up on her list when “The Mistake” moves in and manages it for her.

Autistic people are diminished into fragments of people merely due to their different cognitive ability that has no effect on their sexuality or possession of a soul, yet these two factors seem to include in the “package” of having autism to outsiders. Baggs describes that some of her deepest and most profound experiences from her different cognitive perception are simplified into an insulting and demeaning explanation of simply lacking language, thought, and a soul. This is reflected when Dax’s mother receives the diagnosis that her daughter is Autistic and starts treating her differently. Autism is misinterpreted into sociopathy by her mother, which is parallel to Baggs’s description of the stigma that Autistics lack a soul. Dax also reflects that people with autism are not seen as being able to have sexual desire, yet she proves that bias wrong throughout the book with explicit details of her sexual interactions and desires with/for Chill, Petra, and Angela.

Many characters approach Dax as if something is absent and she is not adequate as she is. Even though many people autistic or not, have short-comings or flaws it seems as if hers are more apparent due to the fact of her Autism. Dax does not seem bothered by her condition; she seems to function contentedly in her own skin/mind unless someone else gives her reason to feel difficulty due to discrimination. Dax does not despair about having Autism and it is like Amanda Bagg’s said, “Focusing on absence is the easiest way to describe the presence of something much more important to me than what is absent. Many autistic people have even applied these words to themselves. Some of us do this knowing full well that there is so much more that we cannot say” (Baggs). Dax seems to understand her surroundings as well as other people. The Mistake” is an able-bodied man and yet he seems to be the most challenged of all the characters: between his violence, anger, mixed signals/feelings towards Dax, and abusive behavior towards himself and Dax he seems to be the most impaired character. These narratives prove that absence can be anywhere, not just in an official “diagnosis”.  

A person that is different cognitively is not seen as a human being. Hence, justifying the cruel and unusual treatment at Thunderbird Academy towards their patients and the general treatment of Autistic in modern day culture. They believe that once they have bee “treated” then they will deserve to be treated and acknowledged like everyone else until then they are not a complete human. Autistics are not offered self-agency due to the belief that Autism is worse than diseases such as measles or other preventable vaccinatable diseases. Yet Baggs and Dax show the readers that Autistics have the ability to feel deeply, desire, think deeply and express themselves through their stories.






Works Cited

Baggs, Amanda. “Up in the Clouds and Down in the Valley: My Richness and Yours.” Disability Studies Quarterly, vol. 30, no. 1, 2009, doi:10.18061/dsq.v30i1.1052.

DePackh, Selene. Troubleshooting . Reclamation Press, 2018.



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

Claudia’s Finally Essay: A Deviant Representation of Autism in dePackh’s Novel Troubleshooting

Claudia Woods
Dr. Foss
5/2/19

Selene dePackh challenges people’s understanding of autism through the formidable heroine Dax. Dax’s autistic variance and individuality is set apart from autistic representations we are accustomed to seeing in media. Dax defies stereotypes of how we conceptualize autism–and how we perceive gender and sexuality in autistic people–through her androgynous and queer identity and her relationship with sex.

From the opening of Troubleshooting, dePackh introduces the readers to Dax’s queer and autistic identities. In this dystopian novel, Dax grows up in a world where people with disabilities are forcefully marked, sterilized, institutionalized, and ‘healed’ in torturous ways. Dax’s story begins when she is diagnosed with Autism Spectrum Disorder and inevitably branded with a blue puzzle piece to symbolize her autism. Dax’s mother is drowned in her desire to find a “cure” for Dax, forcing Dax into “treatments” which really consists of “chelation injections, pills that cause fevers, vomiting, and brain stimulation” (dePackh 17). Dax is reduced to an object, solely defined by her diagnoses. Because her autism marks both the beginning and the end of her humanity, Dax is not seen as a human. She is often berated with nicknames such as “small-stuff” “girly” and “little girl” even though she is both surprisingly strong and rejects anything that could encompass femininity. Most importantly, Dax is nameless. Her name–possibly the core of her identity–is repeatedly changed throughout the novel from Sophia, to Archer, to Dakini, and finally to Dax. Despite the discrimination Dax faces throughout her adolescence and adulthood, she still significantly deviates from usual representations of autism. This variation accurately portrays autism in that no two autistic people are exactly alike, but rather they vary tremendously. Dax struggles with accepting how other people view her and her autism: they believe her to be either too functional to be autistic or too slow to be human. She finds motivation in the hatred she experiences to change the world’s ableist perception of her. From a young age, Dax is a target for violence because of her autistic identity; however, unlike her autistic peers she refuses to accept this hatred in girly passivity. Dax’s self-love manifests itself in physically aggressive ways. Dax confesses that “kids on the autistic spectrum draw bullies like flies to roadkill, but I fought back. I was beaten up harder for it, but I could look at myself in the mirror without shame” (dePackh 2). Dax does not feel shame or self hatred for her autism; rather Dax finds power in knowing that she did not accept this hatred from anyone.

One way in which Dax stands apart from other autistic individuals is her direct eye contact with people. Dax receives her first nickname, Archer, as a young child for scrutinizing people’s faces “as if they were under a microscope” (dePackh 2). She finds solace in being a ‘bad’ autistic. By diverting from stereotypical expectations, Dax is able to reclaim her autistic identity. She declares, “I’m autistic, but I don’t look down and away like a good autistic, I stare” (dePackh 3).

Unfortunately, Dax also experiences horizontal ableism from other people with disabilities–even her own friend, Chill. Chill accuses Dax of not being like “other autistics” but Dax refuses “to be categorized without a fight…” (dePackh 2). Dax doesn’t struggle with her Autism, she struggles with how other people perceive her Autism. She struggles with the compulsion that she must effectively change the way other people view and treat her. Whether these expectations stem from genuine or hurtful places, Dax deals with both.

Dax is used to being underestimated by others, but she experiences the opposite with Petra. After Petra, Dax’s lover and advisor accuses Dax of “forging her identity,” Dax is quick to defend her autistic identity, “I’m autistic as hell, actually, test out more severe than a lot who don’t talk. ‘Mild’ autism isn’t how I experience being autistic, it’s how you experience my being autistic” (dePackh 78-79). Dax ferociously holds onto and defends her own understanding of her autism. Despite neurotypical people explaining to her what autism is and how it should be experienced, she never loses touch with her own conception and experience of her autism. Despite Dax’s vulnerable identities, she emerges from the beginning as an untouchable force that cannot and will not be defined nor measured by others.

While Dax varies from the typical representation of autistic people, she also rejects femininity and its gender roles. Dax rejects femininity in her presentation, her friendships and romantic relationships, and her spunky aggression. Dax proudly professes, “My sexual wiring was in place, and the touch of androgyny from the surgery didn’t necessarily hurt an edgy attractiveness” (dePackh 33). Dax’s androgynous appearance – with her shaved hair and hatred for the color pink – and queer identity sets her apart from other female characters. Dax never pretends to be someone she is not. Reflecting on her childhood, she recounts: “No matter how many disgusting pink dresses my mother tried to keep me in, I never wanted to be the princess; I wanted to be the one who won her” (dePackh 18). As a young girl, Dax understood her queerness and harnessed her sexuality. Dax takes on a role within lesbian relationships as sexually dominant. However, autistic individuals are rarely seen as “desiring subjects or objects of desire… And when sex and disability are linked in contemporary American cultures, the sexuality of disabled people is typically depicted in terms of tragic deficiency” (Mollow, Mcruer 1). Representation of sexuality in autistic people, like Mollow and Mcruer suggest, autistic people are represented as asexual and inexperienced. Dax’s character defies these narrow-minded and inaccurate portrayals, redefining what it means to be an autistic person and a sexual being. Often dePakch challenges this asexual expectation of autistic individuals and gives readers an autistic character with not only sexual desires but queer sexual desires. As dePackh is suggesting, individuals with ASD have sexual needs and desires, are interested in romantic relationships, and have similar experiences and behaviors just like neurotypical people (Dekker 2017). dePackh’s scenes even border on pornographic at times, in Dax’s sexual encounters with Petra. Dax initiates their first sexual relation quite dominantly. Right before consensually jumping on Petra, Dax reflects, “I kissed her before I knew what I was doing, but I knew exactly what I was doing when I slid my hand down…” (dePackh 82). This incredible sexual desire surpasses all expectations of autistics. In dePakh’s representation of Dax, she provides a new, more encompassing depiction of autism.

This kind of linguistic awareness provides the groundwork for new understandings of people with disabilities as fully human. It follows from that theory that people with autism are empowered by constructions of their identity are that individualized, affirming of difference, reinforcing of personal dignity, and dynamically interpreted in the context of everyday living situations (Bumiller, 971).

By writing a queer, autistic character like Dax, dePakh is challenging societies representations of autistic people and redefining gender and queerness as they relate to autism. This reclamation has the ability to broaden neurotypical people’s perceptions of autistic individuals and empower the identities of autistic people. Although Dax’s identity as a queer, autistic woman is repeatedly targeted throughout Troubleshooting, by presenting herself androgynously, exhibiting behaviors unlike autistic stereotypes, physically defending herself, and engaging in queer, sexual relationships, she reclaims her vulnerabilities and redefines what it means to be Dax.

Word Count: 1233

Works Cited
Bumiller, Kristin. “Quirky Citizens: Autism, Gender, and Reimagining Disability.” The University of Chicago Press Journals, vol. 33, no. 4, 2008, pp. 967-991.

Dekker, Linda P et al. “Psychosexual Functioning of Cognitively-able Adolescents with Autism Spectrum Disorder Compared to Typically Developing Peers: The Development and Testing of the Teen Transition Inventory- a Self- and Parent Report Questionnaire on Psychosexual Functioning.” Journal of autism and developmental disorders, vol. 47, no. 6, 2017, pp. 1716-1738.

dePackh, Selene. Troubleshooting: Glitch in the System. San Francisco: Reclamation Press, 2018.
Kafer, Alison. “Feminist, Queer, Crip: Imagined Futures.” 2012, pp. 1-17.

Clark Baranoski’s Final

Clark Baranoski

ENGL 384

Dr. Foss

2 May 2019

Throughout the years, autism has usually been viewed as a negative thing, a disorder that should be fixed and one that wrecks the lives of caregivers and families. Especially with nonverbal or nonspeaking individuals, outsiders often view them as somehow lost or trapped in their own bodies, or they assume that, because the autistic individual is not speaking their thoughts, they do not have complex thoughts to begin with. Several of our readings have proven this wrong and should be read by everybody with that mindset. Two readings that particularly drive the message home that autism is not some sort of tragedy that should try to be cured are Jim Sinclair’s “Don’t Mourn for Us” and “Cultural Commentary: Communicate with Me” by DJ Savarese.

So often, the focus on autism discussions is how hard it is for parents and other outsiders to deal with autistic individuals. While there are challenges for parents, such as the fact it is most likely very frustrating and upsetting for a parent who may not be able to calm their autistic child down, or may not know what their child wants, whatever challenge there is for the parent is undoubtedly not as important as the child’s. For example, if a crowded place like the mall is overstimulating with bright lights, loud noises and too many people, the child may experience sensory overload to the point where the environment is actually painful to be in. A trip to the mall would certainly be stressful for the child who is overstimulated, but most people would probably sympathize with the parent for having to deal with the effects of the child’s sensory overload, such as screaming or trying to run out of the mall, rather than consider how much of a horrible experience it is for the child. To non-autistic people, the child’s reaction seems like an overreaction because they are not bombarded with sensory stimuli like the child is and do not see how a trip to the mall could be so overwhelming and distressing. Many people who may not know about autism might think the child is simply being a brat for screaming.

While aspects such as sensory difficulties may make some aspects of life hard, one should not grieve the autistic individual’s existence or their autism. As Sinclair eloquently puts it, “continuing focus on the child’s autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them” (Sinclair, n.p.). Autism is typically viewed as a huge game-changer, and while Sinclair admits that there is grief over learning one’s child will not be what who the parents thought their child would be, no parent in the world can predict their child, autism or not. Some parents mourn autistic children because they are not the non-autistic child they envisioned (Sinclair, n.p.). But very few parents get the child they envisioned or fantasized about. Even if their child is not autistic, they could still turn out quite different from the parent’s expectations, such as active, sport-loving parents having a child who would rather sit inside and play video games or bibliophile parents having a child who will not willingly read a book. This is the same scenario in that their child is not who they expected and they may wonder how they will connect with their child who seems so different from them, yet an autism diagnosis is viewed as a tragedy. Yet a book-loving parent could think they may not be able to connect with their autistic child, only to find out their autistic child also loves books and they could connect through reading.

DJ Savarese offers a look into his mind that shows that he is aware and eager to connect with others despite outward appearances. When he does not greet people directly, it may appear he is not interested in people. This is hardly the case. Savarese does not greet people directly because it would be far too overwhelming to do so (Savarese, n.p.). It may appear to outsiders that Savarese, and other individuals on the autism spectrum, is not interested in other people, but he quite clearly is. He wants to make friends and get to know people, but the way he does so is a little different. To an outsider, it may look like his facilitator is guiding the pencil or his hand when he types, which could lead people to the assumption that Savarese is not the one typing at all and that his facilitator is communicating for him (Savarese, n.p.). Savarese’s perspective made me think of the autistic children I volunteered with at a summer reading camp a few years ago. Most were nonspeaking and communicated, like Savarese, by spelling out words on letter boards or typing. It often seemed like they were not listening to the middle-grade books we were reading out loud, because they were flipping through other books or off in the corner looking at photo cards. Yet when we asked a question about the book we were reading, they more often than not answered correctly, which proved they were listening the whole time. This helps prove Savarese’s point that autistic people are aware of what is going on around them, even if other people might not think they are aware or paying attention. The children I volunteered with could answer questions about how the characters were feeling, putting themselves in the character’s shoes and disproving the whole theory that autistic individuals lack a theory of mind. DJ Savarese also talks about how he may not hear people at certain times which is why he does not respond, and he may take a while before he can show he notices somebody (Savarese, n.p.) This helps show that autistic individuals are not merely ignoring others as some people think. Surprisingly, Savarese also tells the reader to ignore his body, including signs for “done” and “break”, when it seems counterintuitive. This may be quite true in Savarese’s case, but it could lead to people ignoring other autistic people when they indicate they need a break. If someone ignores the sign for “break”, then when the child really needs a break, they may be ignored like the boy who cried wolf.

These articles show that autistic people experience life in a different, unexpected way, and while some aspects are more overwhelming for some autistic individuals, their lives are just as fulfilling and complete as their typical friends and family.

Word Count: 1084

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

Clark Baranoski

Works Cited

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

Sinclair, Jim. “Don’t Mourn For Us.” Our Voice, vol. 1, 1993.

Krista’s Final Essay: Autism and Sexuality in Troubleshooting and The Kiss Quotient

The non-disabled community has a long history of desexualizing disabled people. No matter the disability, it is assumed that they will never be able find love, have a relationship, or engage in sexual activity. Troubleshooting, by Selene dePackh and The Kiss Quotient, by Helen Hoang, both novels with autistic, female protagonists, break this stereotype, showing that these women are, in fact, capable of having and maintaining sexual and romantic relationships. Troubleshooting tells the story of an autistic woman navigating the dystopian deterioration of the United States and heightened discrimination against persons with disabilities. The Kiss Quotient is a romance about an autistic woman who wants to overcome her awkwardness with intimacy and sex, so she hires a male escort to give her sex and dating lessons, only to fall in love with him. Though the protagonists of both novels break the stereotype of disabled persons being asexual, only Scope from Troubleshooting finds empowerment in the intersections of her gender and disability, whereas Stella from The Kiss Quotient buys into the submissive stereotypes that accompany her gender and her disability. 

Scope finds empowerment in testing the limits of traditional gender roles, while Stella’s femininity makes her frustratingly submissive. In working for Bern, Scope embodies a dominatrix persona which she continues to perform in future relationships. In all of her relationships and sexual liaisons, she is the initiating partner and, with both Angie and Chill, she is the penetrating partner with an artificial apparatus. In intercourse with Angie and Chill, they are restrained—by choice—but Scope is never restrained, giving her the clear upper hand. She is also on top during intercourse. Scope describes herself as a lesbian, a deviant sexuality in which the power dynamics are unclear. Scope, who might be described as Butch, takes on the traditional role of the male in her relationships with Petra, in initiating and ending it both times they get together. In her relationship with Chill, he and Scope switch gender roles, he following the more submissive script and she following the more active script. In their first sexual encounter Scope “held him down by his neck, straddled him, and told him to unzip” (dePackh 178). Later in their relationship, Scope notes, “[h]e moved into the most submissive position he’d ever offered me, urging me to take what I owned, raising his skinny bum with his inked arms stretched back so I could grip his wrists” (207). Though Scope identifies as female and Chill identifies as male, in their relationship, their gender roles swap. Despite living in a dystopian society that tries to dehumanize and disempower her, Scope asserts herself in her relationships claiming power when she can.

In The Kiss Quotient, though Stella gains a degree of empowerment by being the initiator and paying client, Michael’s masculinity and higher level of sexual experience gives him more power in their relationship. The power dynamics of sex work are complicated. In discussing the power relations of the money exchange for female sex workers, Anne McClintock points out that the moment of money changing hands is “a ritual exchange that confirms and guarantees each time the man’s apparent economic mastery over the women’s sexuality, work and time. At the same time, however, the moment of paying confirms the opposite: the man’s dependence on the woman’s sexual power and skill” (Anne McClintock 1992, 72). In this case, Stella is the one paying for Michael’s services and her money is her only source of power in the novel; in fact, by the end of the novel, Stella has donated enough money to the medical center to cover all of Michael’s mother’s bills, the reason he was escorting. She says that she wants to give him the choice to escort or not (Hoang 309). But, as McClintock notes, after the transfer of money, the power dynamic shifts back to the sex worker as the client relies on his experience. Throughout their relationship, Stella is always asking Michael if she is doing the right thing when it comes to their sex lessons. Despite being a sex worker, which is traditionally seen as a disempowering job, Michael’s masculinity makes him feel that he has a responsibility to take care of Stella, even though she has way more money than he will ever have. Even during their first meeting, Michael acts overly protective of her, feeling anger and jealousy when he hears about other men she has been with. Toward the end of the novel, Stella and Michael have broken up and Stella is trying to date other people. Michael sees her and punches the man she was with. Stella attempts to go home alone but Michael follows her. She asks him to leave her alone but he ignores this and basically stalks her until she gives in. Although she is in love with him throughout this and does really want to get back together with him, it still demonstrates how little power she had in their relationship.

Though both Stella and Scope face challenges and discrimination as a result of their autism, Scope is the only one who claims the identity and uses it to her advantage. Scope is institutionalized because of her disability and the violent perceptions people have about autism. While in the institution, she is asked to prostitute herself for the enjoyment of Sam, a prison guard, and Angie, a fellow inmate. Though Scope doesn’t want to do this, she manages to spin the situation to her advantage, improving her life at Thunderbird Mountain in exchange for sexual acts. The only time the reader sees Scope as not in control of her relationships is when she is with the Mistake. Here Scope is taken in by his kind offers of help after they have both lost their jobs. The Mistake manipulates her until he is in control of her house, money, and new job, and then he begins to abuse her. Scope is aware that he is using her, but she also recognizes that her disability makes it impossible to free herself from him: “As a solitary autistic, I needed him and he knew it” (dePackh 115). After enduring several years of abuse, Scope comes back into contact with the Dark family, whom she thinks can protect her. This gives her the support she needs to beat the Mistake senseless and leave the house, after which she is taken in by Chill. After the Mistake, Scope makes the vow that she “will never be touched against [her] will—ever, by anyone—again” (177), and then she is the one to initiate a relationship with Chill in which she is the penetrative partner and the one calling all the shots, deciding if they will remain together, deciding when and if they will have sex. Scope claims her autism. Though she recognizes her limitations, she never denies that autism is part of her identity. When Petra first meets her, she thinks Scope is faking her disability. Scope tells her,  “‘Mild’ autism isn’t how I experience being, autistic, it’s how you experience my being autistic” (78). She also uses the stereotypes about autism to her advantage, managing to get the passwords to hack into the her work’s computer network: “He muttered something about me not being smart enough to use it…I bowed my head and followed Luce Dark’s advice about letting people think I was as dumb as they wanted to” (131).

Conversely, Stella feels a lot of self-doubt and self-loathing because of being autistic. She doesn’t think she is good enough for Michael because of her autism. She does not believe he would want to stay with her if she was not paying him. Throughout the novel she refers to herself as “nuts” with a negative connotation when she thinks about her obsessions and other tendencies that come with autism (Hoang 57). She thinks “[sh]e’d be less” in Michael’s eyes if he found out about her autism (136). Although Michael and Stella end up together at the end of the novel and he doesn’t reject her when he finds out, Stella never comes to a place of self-acceptance independent from Michael’s love, which is overprotective and infantilizing. There is one moment after Stella and Michael have broken up that she claims her autism: “She saw and interacted with the world in a different way, but that was her…she would always be autistic,” but when she tries unsuccessfully to be with someone else, and then goes back to Michael, her self-acceptance seems hollow (287). Instead there is the insinuation that Stella ‘overcomes’ her autism to find intimacy, love, and good sex. 

The female, autistic protagonists of Troubleshooting and The Kiss Quotient both demonstrate that disabled people can be sexual beings. But while Scope finds empowerment through defying gender norms and using the limitations of her disability to her advantage, Stella slips into the submissive stereotypes that accompany females and people with disabilities. 

(Word Count: 1490)

Sources

dePackh, Selene. Troubleshooting. San Francisco: Reclamation Press, 2018.

Hoang, Helen. The Kiss Quotient. New York: Penguin Random House, 2018.

McClintock, Anne. “Screwing the System: Sexwork, Race, and the Law.” boundary 2, vol. 19, no. 2, 1992, pp. 70–95. 

I pledge…Krista Beucler

Autism Within Of Mice and Men

So I forgot my password and it wouldn’t let me log in, so that was fun. Here’s my final!

Molly Avery

4/30/19

English 384

Professor Foss

Autism Within Of Mice and Men

In John Steinbeck’s Of Mice and Men disability is shown throughout the entirety of the text in three of the most prominent characters. Although two of these disabilities are physical, mental disability is addressed in the story through the character Lennie. While readers appreciate the representation, they are never explicitly told what disability he possesses. He is often assumed to be intellectually disabled, but through close reading, one can conclude that Lennie is actually an autistic character.

Literary analysts are quick to shut down theories of Lennie being autistic due to the fact that Of Mice and Men was published before the first autistic diagnosis in 1943. While this does support the fact that Steinbeck did not write Lennie as an autistic character, it doesn’t make him any less of one. Most mental disabilities used to be classified as intellectual disability at the time the book was written. Since then though, doctors have broaden these terms to more accurately diagnose patients based off of the exact symptoms they display. Lennie shows multiple signs of having specific symptoms that fall on the autism spectrum, as is supported by the text. Despite what analysts say Lennie’s sensitivity to touch, lack of  social skills, and incapability to control his body, prove him to be an autistic character.

Throughout the book Lennie has an obsession with touching various items that one could consider soft. This is first shown when Lennie finds a dead mouse in the very first chapter of the book. Multiple times throughout the first five pages Lennie attempts to discreetly reach into his pocket to pet the mouse, although this fails as George does eventually notice. Lennie argues that the mouse is a source of comfort for him, stating that he “could pet it with my thumb while we walked along,” (Steinbeck, 5). Although people on the autism spectrum can sometimes be sensitive to the things they touch, they can also adore the feeling of petting certain materials as well. This is shown through the story not just with the mouse in the beginning, but also with rabbits, dogs, hair, and clothing. Touching these things are usually comforting for an autistic person, and having it taken away may cause a distressed breakdown. Lennie shows the reader this when they learn about the backstory of what ran the two men out of their old town Weed. Back in their old work place, Lennie was fascinated by a young girls dress. Not knowing better, Lennie goes over to touch the fabric of the dress in a memorized state. The girl, obviously distressed by this unwanted interaction, begs him to let go. Lennie does not understand why he should, and is distraught at the idea that he cannot feel the fabric. He ignores the girls pleas, and continues to stroke it. The girl screams of attempted rape, and George and Lennie must skip town before harm can come to them. These two specific examples as well as other unstated ones prove that Lennie is sensitive to touch, whether it’s in a comforting way or disturbing way. Sensitivity to touch is just one of many common traits of an autistic person.

Another autistic trait that Lennie shows is a lack common social skills, that most men of his age would be aware of. A majority of people on the autism spectrum are usually socially incompetent in some way, and Lennie fits right into that. Of all the symptoms Lennie shows of being autistic this is the strongest. At the very beginning the reader learns of this incompetence when George has to give him specific instructions on how to act. “That ranch we’re goin’ to is right down there about a quarter mile. We’re gonna go in an’ see the boss. Now, look -I’ll give him the work tickets, but you ain’t gonna say a word. You jus’ stand there and don’t say nothing. If he finds out what a crazy bastard you are, we won’t get no job, but if he sees ya work before he hears ya talk, we’re set. Ya got that?” (Steinbeck, 6). Even with these instructions Lennie forgets them right away, and speaks up while they are meeting the boss for the first time. It is not only in the beginning of the story that the reader sees this though, it’s throughout the entire piece. Every single thing Lennie does is directly caused by his disability. Lennie doesn’t fit in with the rest of the workers at any point throughout the piece. When they go to play horseshoes, Lennie stays behind in the barn, and when the girl in Weed asks him to let go of her dress, he keeps petting it. George often has to take what people say to Lennie and repeat it to him through a filtered lens. Lennie lacks the ability to comprehend people’s demands and wishes, which is a trait an autistic person would show.

Another sign of proof that Lennie falls on the autistic spectrum is that Lennie fails to have control over his own body. He is described as a big man that often is not aware of his own strength. Throughout various points in the story Lennie often kills animals while trying to show them affection by petting them. He does this with mice, rabbits, and eventually Curley’s wife. Although many people can be unaware of their own strength, this is a symptom that points to autism. The worst of this problem occurs at the end when Lennie is petting Curley’s wife hair. She does not wish to have her hair touched and demands he lets go. Just like in Weed with the girl in the dress, Lennie does not understand why he must give up this simple pleasure and continues to stroke it. This angers her as she starts yelling at Lennie to let go. Not wanting George to be upset at her yelling, Lennie grows angry, and attempts to silence her. Unaware and incapable of controlling himself, he does this by accidentally killing her. Steinbeck describes her death quietly stating that “She continued to struggle, and her eyes were wild with terror. She shook her then, and he was angry with her. ‘Don’t you go yelling,’ he said, and he shook her; and her body flopped like a fish. And then she was still, for Lennie had broken her neck,” (Steinbeck, 87). This shows that Lennie is incapable of controlling himself, just as some people on the autism spectrum are unable to fully control their body at times.

By closely reading the text, one can conclude that Lennie is autistic rather than intellectually disabled. Readers may continue to reject, but the topic is irrefutable. Lennie appears intellectually disabled to readers, is because intellectual disability and autism share some similar aspects in how they affect a person. This should not be confused as the two being the same though. Lennie is an autistic due to his sensitivity to touch, absence of common social skills, and lack of control over his own body.

I pledge… Molly Avery

Word Count: 1170

CitationsSteinbeck, John. Of Mice and Men. Modern Library, 1938.

Daley’s Final Essay

How The Myth of “High-Functioning” Autism is Hurting the Community

The rhetoric surrounding the autism spectrum has expanded from when it first surfaced, understanding of the condition has expanded along with it. Unfortunately, this rhetoric and these terms have often been coined by people who aren’t on the autism spectrum, because of how autism affects communication of the individual. This is explored in Ari Ne’eman’s piece “Dueling Narratives: Neurotypical and Autistic perspectives about the autism spectrum”, in which she takes a look into the different voices that try to craft the narrative of the autism community. At one particular point, she talks about how neurotypical people walk the line between love and supposed hatred of the people they know who are autistic. She talks specifically about how Carolyn See talks about her grandson’s autism. “They describe their autistic traits in a positive as well as negative lights, as See mentions her grandson’s singing-a clear sign of echolalia-shows. So why do they persist in demonizing autism as an exclusively negative force-not to mention marginalizing the autistic narrative of autism?” This trend of picking favorite parts of characteristics of autism (See’s son singing) and condemning other cases is most prominent in the terminology “high-functioning” autism and “low-functioning autism”. “High-functioning” being those who have less noticeable characteristics of autism, and “low-functioning” being those who have more. These terms not only create a rift of comparison in the autism community itself, but they also carry the connotation that “high-functioning autism” is the more socially acceptable diagnosis because it is more familiar to neurotypical people.

Ari Ne’eman best explains it when she states in the abstract for “Dueling Narratives: Neurotypical and Autistic perspectives about the Autism Spectrum” about how the language used to describe people with autism isn’t made for people with autism. “The current models of representation used in reference to autism in popular culture, policymaking and literature predominantly focus on how autistic individuals affect neurotypical society and neurotypicals.” When an autistic person is deemed “high-functioning”, it is because the characteristics of their autism are not as evident, in which they deem the erasure of the individual’s autism as them being a “high-functioning”. The ideation of a “high-functioning” autistic is heavily favored, which is made especially clear in how autistic people are portrayed in the media. If there is an autistic person portrayed, their characteristics are almost exclusively that they do not understand tone and are “adorably” uncomfortable with physical contact. In the even rarer cases that the characters autism is expanded on, the viewership is constantly reminded of how the character has to overcome their autism and how hard it makes their life. It sends the clear message that “high-functioning” is the right way to be autistic. When “low-functioning” is portrayed by the media, it is usually a heart-breaking movie with the autistic person used as a crutch for the character development of the main character, but they always make the characters life hard, and this sends a clear message to the public that this is the wrong way to be autistic, and that people who are “low-functioning” autistic are merely stepping stones to becoming a better person. While not all narratives about a certain type of person have to be the same, there has not been an in-between.

Because of the high and low terms, it sets up a scale of comparison between the autism community, which makes room for gatekeeping and hate within the community, which Ne’eman points out when talking about Temple Grandin, who is famously diagnosed with “high-functioning” autism, “is only opposed to a “cure” for people like her and Asperger’s.” There is no saying as to if Grandin would still take this stance if she had been diagnosed with “low-functioning” autism, but just showing this disdain for people in her own community shows how damaging the comparison is. Because of the terms, there is an obvious and noticeable bias as to what is preferred in society, and whether it is conscious or not, there will be an ingrained bias in whoever hears “high-functioning” and “low-functioning” because it is obvious which one is more acceptable. 

There is no definite origin of the term “high-functioning” and “low-functioning” but there is no doubt that it was coined by a neurotypical person. The term originally applied to autistic people who “were deemed to be cognitively ‘higher functioning’ (with an IQ of 70 or greater) than other people with autism” (Wikipedia), however, since the term has been applied to autistic people who have shown trouble with communication instead of cognitive thinking, such as Amanda Baggs who was mentioned in Ne’eman’s “Dueling Narratives” in responding to Grandin’s want for a cure, who is an autistic blogger that primarily communicates through typing. She is shown to be able to understand and respond to abstract ideas and thinking cognitively, but because of her lack of traditional communication, she is labeled as “low-functioning”. The reason for this is because she is “low-functioning” compared to the ideation of neurotypical people. Simply branding her as a “low-functioning” human being allows for the invalidation of her communication type and for society to brush off trying to develop a type of communication with her.

Since the supposed “low-functioning” narrative is so easy to be dismissive of, campaigns such as AutismSpeaks or War Against autism can easily take advantage of the narrative to twist it into this tragedy that parents and family go through, and society has seemed to just accept it. Ne’eman touches on this when she discusses the documentaries made about the mothers who killed their autistic children because they believed it was for the best. “There exists substantial support for the idea that the murder of autistic children-and adults-is justifiable and constitutes a form of “mercy killings” that should be met with leniency and even encouragement.” The next of the piece has Professor Richard Sobsey disagreeing with this statement completely, but just the idea that this reasoning exists shows how much hate is hidden behind the idea of branding someone as a “low-functioning” autistic person. This kind of rhetoric would never surround a child in a wheelchair, or a child who was born mute. It is also doubtful that a child who was born mute or born without the use of their legs would ever be deemed as “low-functioning”, even if they were being compared to another individual who was only partially mute or on was able to move with the use of crutches.

With the increase of representation that autism is getting in media today, using problematic terminology along with the old ways of thinking about does more to hurt the community instead of trying to help it. The term “high-functioning” or “low-functioning” would never be used when talking about a person who was born deaf or blind, and this type of comparison would never be accepted if it were between two people who were in a wheel chair, so the fact that it is still deemed acceptable for people on the autism spectrum shows an obvious bias against them. In erasing the terminology about them and instead create terminology for them, it will take one step forward in creating a more inclusive and understanding environment for individuals on the spectrum.

Wordcount: 1193

I pledge that I have neither given nor received help on this assignment.

Citations:

Ne’eman, Ari. “Dueling Narratives: Neurotypical and Autistic Perspectives about the Autism Spectrum.” Neeman SAMLA 2007, The Autism Self-Advocacy Network, case.edu/affil/sce/Texts_2007/Neeman.html.

“High-Functioning Autism.” Wikipedia, Wikimedia Foundation, 19 Apr. 2019, en.wikipedia.org/wiki/High-functioning_autism.

Unconditional Support No Matter the Diagnosis

Kaitlyn O’Gorman

ENGL 384

Dr. Foss

30 April 2019

“The tragedy is not that we’re here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world” (Jim Sinclair, Our Voices)?  The role parents take on when they choose to bring a child into the world is to love unconditionally, protect, and support that child no matter what, including an autism diagnosis.  While there are many parents that do accept and embrace their child’s diagnosis; many other parents treat their child’s autism diagnosis the same way one might treat a stage four cancer diagnosis.  However, an autism diagnosis does not equal the end of a child’s life and autism is not masking a child’s true personality, this is their personality.  In order to make an educated analysis of the parents of autistic children it is important to read not only from the parental side but also from the first-hand experiences of an autistic self-advocate; Julia Miele Rodas a disability studies scholar and Melanie Yergeau an autistic adult; give this insight.  Both Rodas and Yergeau share situations in which parents of autistic children have failed to be what their child needed, instead of being their child’s unwavering support system, out of fear and shame parents forget that their autistic child is a person and begin publicly sharing their child’s personal struggles as a way to make themselves feel better.

While the cause of autism is still greatly unknown there are several hundred theories, the ones that stick the most are the theories that place the child’s parent at fault.  Parent’s are often given the blame for their child’s diagnosis which not only results in undue shame but it also plays a big part in how a parent will react to and treat an autism diagnosis.  Rodas writes in the “Introduction” of Autistic Disturbances, about one particular parental response that has unfortunately received a lot of attention.  Celebrity Jenny McCarthy wrote an autism parent-memoir titled Louder Than Words, in which she describes her heart shattering upon learning her child’s diagnosis and states how “everything I had thought was cute was a sign of autism”, (McCarthy, 66).  McCarthy could have accomplished so many things with her influential power but she chose to write her book, Louder Than Words, in such a negative tone that it only adds on to the problem.  The problem is not that some children are born with autism it is the response mothers and fathers have towards their child’s diagnosis.  

McCarthy used her book to identify autism as a “plate of shit” (McCarthy, 65), when she could have created much needed awareness for other parents like her.  She could have maintained her adoration of all the cute things her son did and told the world how much of a blessing it is to watch her son grow and learn. Instead she made a mockery of  autism and created a fear mongering memoir for everyone to read. Rodas mentions that “at the same time the doctor locates hs patient… the mother loses her child” (Rodas, 16), however this does not have to be the case.  It is up to the parent to choose whether or not they will condemn themselves and outcast their child or embrace the diagnosis and continue to love all the cute things their child does.

Now to hear from Yergeau, an autistic self-advocate as she recounts the “shitty narratives”(Yergeau, 3) her mother would recite in her introduction of Involution.  Yergeau was born autistic but did not receive her diagnosis until she reached adulthood. Although her parents were never aware that their child was growing up with autism, Yergeau feels as though they must have known that “there was something about her” (Yergeau, 1).  Yergeau notes that what is typically authored by non-autistic people tends to cast a less than hopeful light on those with autism, “media accounts of autistic people communicate the sensationalism of savant-beings who are at once so extraordinary yet so epistemically distant and critically impaired” (Yergeau, 3).  The previous statement only accounts for what the media says about autism however, this can also pertain to what parents of autistic children say as well. In Chloe Silverman’s Understanding Autism, one parent mentions “if you hang around [autism] parents enough, all we talk about is poop” (Silverman).  Yergeau recounts that her mother’s favorite stories to tell about her growing up also had to do with young Yergeau smearing feces everywhere.  Another thing to consider when thinking about shared narratives such as “poop talk” the parent is really only talking about themselves, “parental poop talk is perhaps the most effectively loaded of all poop talk… it relates smearing, eating, and rectal digging in graphically humanizing terms… The humanization in autism poop talk, of course, is rarely about the human whose poop has been thrust into the spotlight” (Yergeau, 3).   While it may be true that by sharing these narratives with other parents of autistic children it gives parents a comforting sense of normality within the community, these narratives are not given with the proper consideration as to how this exposed information might affect the child.

There is so much mystery and countering arguments surrounding autism that it is understandable to be taken aback upon learning the child’s diagnosis.  After this brief moment of shock it is now the parent’s duty to obtain as much knowledge they can so that they can overcome, adapt, and provide the best life for their child.  There are several ways parents can go about this research; first, they should always ask their child’s doctor for any and all information or advice they can provide. Secondly, there is a growing community of parents who also have children with autism that are more than happy to share what they have learned with other members of the community.  When all else fails the internet is a wealth of knowledge filled with research articles as well as self-advocating articles written by autistic adults. However, it is important to remember that while we know more about autism than we did ten years ago, it is still largely a mystery and not all the information put out on the internet is entirely true.  Most importantly parents can not ignore the diagnosis out of fear or embarrassment. By receiving their child’s diagnosis parents are being given an answer and the opportunity to truly get to know their child. The parents are now able to learn how to properly and productively work with their child to increase their overall success in life.

The parental role no matter what the situation or diagnosis, is to protect their child.  This means maintaining a level of strength and privacy for the child so that the he or she does not have to grow up battling stigmatization from their own mother and father.  This means supporting and encouraging the child to continue working for improvements. Rather than feeling ashamed or sorry for themselves parents of autistic children should be working together to reach new milestones.  These parents should be creating blogs and writing memoirs to inform the general public about the real truths of autism. The media and medical offices have and will continue publishing the negative stories about autism; parents have the opportunity to share the joy their child creates and accomplishments they make.

I Pledge…. Kaitlyn O’Gorman

Word count: 1,225

Work Cited

  • McCarthy, Jenny. Louder Than Words , 2007.
  • Rodas, Julia Miele. “Autistic Disturbances: Theorizing Autism Poetics from the DSM to Robinson Crusoe.” Autistic Disturbances: Theorizing Autism Poetics from the DSM to Robinson Crusoe, University of Michigan Press, 2018, pp. 1–30.
  • Sinclair, Jim. “DON’T MOURN FOR US.” Don’t Mourn For Us, 2002, www.autreat.com/dont_mourn.html.
  • Yergeau, Natalie. “Introduction: Involution.” Authoring Autism: On Rhetoric and Neurological    Queerness. Durham: Duke University Press, 2017. Accessed 30 April 2019

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