Tag: Dueling Narratives: Neurotypical and Autistic Perspectives About the Autism Spectrum
Rachel, James, and Lueden’s Final Paper
Rachel Mullins, James M Pryor, & Lueden Sheikhnureldin
Dr. Foss
ENGL 384-02
April 28,2020
Autism in Popular Culture
Prompt #2
In popular media representation such as on television and film, Autistic characters are overwhelmingly portrayed as males, specifically white males, and while there is a small percentage of Autistic female characters, they are also white. Visual media greatly lacks representation for Autistics of color. These shows and movies lack input from the Autistic community and are usually based on stereotypes which results in not only every character in these shows and movies being virtually the same, but also enforces the notion that only white people are Autistic. This stereotype is extremely harmful for Autistic people of color because they are invalidated constantly and can feel like there is no place in the community for them (Giwa-Onaiwu xiii). Another trope derived from the lack of Autistic input in these shows and movies is that these Autistic characters are usually there to simply ‘teach’ a non-Autistic person how to be kind, and they more likely than not have some sort of ‘bizarre’ talent or interest that is supposed to show how amazing Autistic minds are. While on the surface it sounds like acceptance, in reality it pushes the idea that an Autistic person needs some special skill to validate their existence. These negative representations of autism in movies and TV shows led to Autistic people not relating to canonly Autistic characters, but instead saying characters that they relate to or like are Autistic as a way of saying that if those characters were explicitly stated to be Autistic, they’d be better representations than what is shown now. Visual media representation is extremely important because this is where people get most of their ideas and beliefs, so by showing bad representation, it leads to harmful misconceptions of the Autistic community and makes Autistic people feel unrepresented (Ne’eman). If creators of these television shows and films used Autistic input, there would be less perpetuation of these stereotypes and more diverse representation for Autistic people.
A character that is considered the ‘blueprint’ for Autistic characters is Raymond ‘Ray’ Babbitt from the movie Rain Man. Raymond fits the stereotype for Autistic people greatly. He is a white male, is an extremely fast counter which is his ‘bizarre’ habit or trait, and as argued by many critics, his autism is not for representation, but is one of the many stories of how autism affects neurotypicals instead of how it affects Autistic people (Ne’eman). Raymond’s character is also not played by an Autistic actor. The inspiration for Raymond’s character was inspired by a man named Kim Peek who did not have autism, but had savant syndrome (Treffert). While Peek seemed to be in support of this character and this movie, this film is the cause of a lot of misconceptions of autism such as all Autistic people being savants and that autism is only present in white men. Furthermore, having a non-autistic person portraying an Autistic character makes autism seem like it is not a valid identity, but instead something one can just ‘pretend’ to be and turn on and off when needed. Having an Autistic actor is the best option for better representation because it shows how autism is a real, lived experience. A character that is the product of Autistic input is Julia from the popular kids’ show, Sesame Street. Julia is an Autistic little girl and was added to the main cast as a way to promote diversity and so Autistic fans of the same show could have a character to relate to. Julia was created with input from Autistic people such as the Autistic Self Advocacy Network who helped workshop her (ASAN). Julia was a revolutionary character, until Sesame Street partnered with Autism Speaks, an organization known for speaking over Autistic people and treating autism as something to be fixed. This completely undermined everything Julia stood for and took Julia from being great representation to another Autistic character whose sole purpose is to ‘help’ neurotypical people. What happened to Julia is more proof of how neurotypical people ruin Autistic representation for Autistic people.
In Ari Ne’eman’s Dueling Narratives: Neurotypical and Autistic Perspectives About the Autism Spectrum, he brings up several points on how parents and doctors damage the Autistic community with the way they talk about autism; saying falsehoods such as how autism “steals” children, ruins families, and is something that only people who are close to Autistic people ‘truly’ experience. Inevitably, these false narratives are translated into the media. Since autism is so villainized, these characters are portrayed as pitiful and helpless. This reason is why the savant trope is so problematic because it tells the audience that Autistic people are to be pitied, but ‘at least’ they have this talent going from them. These narratives are exceptionally harmful to Autistics of color. Neurotypical people do not get their input from Autistic people, so they make these narratives based on what they know instead which leads people of color not being accounted for in these narratives. Morénike Giwa Onaiwu’s Autistics of Color: We Exist…We Matter describes her experience as an Autistic Black woman and how both her identities have been invalidated. Some would say she is too Black to be Autistic and too Autistic to be Black. Autistics of color are only represented when they need to be seen as sad stories and examples for the community to not exclude them (Giwa-Onaiwu xii). They are rarely represented in the way white Autistic people are as people with interests and positive lives. Her experience with ableism and racism as an Autistic Black woman can be linked to the fact that Autistics of color are never seen in visual media (Giwa-Onaiwu xv). Bad representation is a vicious cycle in this case. Lack of Autistics of color in visual media leads to people thinking that people of color can not be Autistic which leads to more media without Autistics of color. This is why Autistic people being the actors, writers, creators, etc. is so important. More autistic people putting their lived experiences into something leaves less room for misconceptions and damaging stereotypes.
One positive from having stereotypical characters, is that Autistic community has found comfort in calling characters that are not canonly Autistic, autistic (Mullins). Many Autistic people had found the representation they were being given extremely offensive and found that there were many characters who were not explicitly stated to be Autistic to be much better representations than what they are given. Some of these characters are considered to be autistic coded which means the character is Autistic, but not stated by the creator for various reasons or based on an Autistic person (Mullins). While this can be a very empowering way to interact with ableist popular culture, it has its own issues such as white characters more likely to be coded as Autistic by fans than non white ones. White Autistic people can be just as guilty as white neurotypical people for the exclusion of Autistics of color (Giwa-Onaiwu xi). The problem lies in the fact that there is not enough Autistic created content or input being put into the mainstream pop culture which causes this aforementioned vicious cycle of bad representation.
Autistic representation in visual media is run by neurotypicals for neurotypicals instead of being by Autstic people for Autistic people. The harm these movies and television shows do have real world effects. The idea of autism affecting neurotypical people exclusively is only enhanced by these representations. Autistics of color being viewed as non existent is backed up by them never being what people see in movies and film. Autistic people are represented as white men who have one particular interest and if someone does not fit that image, then they can not be Autistic (Giwa-Onaiwu xv). The lack of Autistic voices causes the rise of neurotypical stories being told under the guise of Autistic stories. By not having Autistic representation that Autistic people can resonate with, they are given Autistic representation that neurotypical people can take and bend for even more damaging narratives (Ne’eman). By having more Autistic people being involved with the making of these TV shows and films, the neurotypical narratives would diminish greatly. Autistic people are not plot material and devices; autism needs to be shown as a valid identity and not simply something non autistic people experience and are completely changed by. The Autistic voice in the media should belong to Autistic people, so their stories are not told as sob stories or cure seeking.
Word Count: 1,408
We pledge
Works Cited
ASAN. “ASAN Has Ended Partnership With Sesame Street.” Autistic Self Advocacy Network, 2 Aug. 2019, autisticadvocacy.org/2019/08/asan-has-ended-partnership-with-sesame-street/.
Brown, Lydia X. Z., and Morénike Giwa-Onaiwu. “Autistics of Color: We Exist…We Matter.” All the Weight of Our Dreams: on Living Racialized Autism, DragonBee Press, 2017, pp. X-xxii.
Mullins, Christa. “Reflection: Autistic-Coded Characters and Fans in Fandom.” Canadian Journal of Disability Studies, vol. 8, no. 2, 2019, doi.org/10.15353/cjds.v8i2.495.
Ne’eman, Ari. “Dueling Narratives: Neurotypical and Autistic Perspectives About the Autism Spectrum.” The Society for Critical Exchange , 2007, case.edu/affil/sce/Texts_2007/Ne’eman.html.
Treffert, Darold. “Rain Man, the Movie / Rain Man, Real Life.” Agnesian, 2017, ttps://www.agnesian.com/blog/rain-man-movie-rain-man-real-life.
Jess’ Final
Step Aside Neurotypicals: Analyzing the Autistic Narrative
Ari Ne’eman, founder of the Autistic Self-Advocacy Network, critiques the academic ableism within autism studies with his paper “Dueling Narratives: Neurotypical and Autistic Perspectives about the Autism Spectrum.” Ne’eman admits that his writing is more biased than scholarly, but argues that there is a lack of real representation of autism in academic writing and research. Ne’eman states his purpose is: “to provide new information and analysis to the academic community that will help build a better understanding of an important and growing issue: the autism spectrum, how to define it, what it entails and what to do about its growing visibility in the world today . . . an insider perspective should be welcome” which successfully supports Ne’emans reasoning for the importance of his own lived experience. As an autistic individual and prominent self-advocate, Ne’eman’s voice is important to acknowledge. Ne’eman cites a lack of autistic perspective within studies as another reason for his paper to show “the biases inherent in the . . . image of the autism spectrum, as defined by family members of autistic children and medical professionals, and explain how these biases have negatively impacted both parents and people on the spectrum;” thus, the reasoning for Ne’eman’s title of dueling narratives in reference to the autism spectrum. Ne’eman’s paper demonstrates how neurotypical dictatorship of perspectives on autism are damaging to autistic individuals and their families.
The medical spectrum of autism is very wide. A diagnosis of autism can vary in form from Asperger’s Syndrome to Nonverbal Learning Disability. With such a wide range of diagnoses within the label of autism, it is hard to really narrow down a concrete definition. Autism advocacy is also very politicized with neurotypicals like Jon Shestack, founder of Cure Autism Now, declaring war on autism, and searching for a cure as if autism is cancer to society (Ne’eman). The war on autism gained political traction when the bill “Combating Autism Act” passed in the House with a $1 billion dollar research budget to find a cure for autism. These public acts reinforce the damaging narrative that autism is a disease. Theories that mothers cause autism by acting cold towards their children can autism also circulated. This places the blame of a genetic condition from birth upon the parents of any neurodiverse child.
Treating an autism diagnosis as a negative enforces the fallacy of the missing self. Ne’eman defines the fallacy as an: “overarching message of most portrayals of the autism spectrum and the people on it reflect a tragedy that robs humanity, leaving behind something –someone – that must, implicitly, be sub-human,” meaning that people who are autistic are unable to possess a sense of self. The fallacy of the missing self dehumanizes people who are autistic by making autistic individuals appear as soulless creatures. Ne’eman quotes Shestack again with: “this is the special curse of autism. You have your child, and yet you don’t have him. You have a shell, a ghost of all the dreams and hopes you ever had.” Shestack and his organization present autism as an evil force that steals away the true child. This kind of impaired thinking from the neurotypical narrative pressurizes educators, parents, and professionals to believe that autistic individuals are never capable of independence – which hinders autistic people in their strive for individual freedom.
The fallacy of the missing self continues to fail autistic people who are nonverbal. Ne’eman references an autistic woman who runs her own website called “Getting the Truth Out,” to share her narrative as a neurodiverse individual. The site contains a photograph of the woman wearing a shirt that reads: “not being able to speak is not the same as having nothing to say.” According to Ne’eman, “Getting the Truth Out” serves as “a condemnation of the simplistic and inaccurate view of autistics as voiceless tragedies.” The woman who runs the site does not share a message of despair, but rather of the normalcy of the life she lives.
In order to enact real change, Ne’eman calls upon the autistic community to “continue to condemn language and advertising that implicitly endorses eugenics.” The condemnation of organizations like Cure Autism Now will reveal the truth behind the harmful neurotypical ideologies. On the other hand, Ne’eman does acknowledge that autism advocates have been trying to spread the effects of cure rhetoric upon the autistic community. The way to improve this tactic is to “advance a positive image of the autism spectrum” by showing the strengths of a non-neurotypical diagnosis to the public. Ne’eman calls upon the autistic community to present a clear definition of autism to the neurotypical narrative so that individuals who are autistic can be understood by society as a whole. It is frustrating to admit that the neurotypical community cannot understand autism without a clear-cut definition – especially since autism can present itself vastly different from person to person.
The major roadblock for advancement is the clash between the narrative of the autistic community and the neurotypical script. Ne’eman writes: “The autistic community recognizes the grieving process that parents go through after receiving their children’s diagnoses and learn that the life of an autistic individual can be very different from what parents expected for their child.” However, that grieving process cannot last for the child’s entire life, or else the autistic child will grow up believing the fallacy of the missing self. Parents, educators, and the rest of society need to reject the neurotypical narrative that has dominated the meaning of an autism diagnosis for too long. Ne’eman’s evidence of the damaging effects of organizations like Autism Speaks, Cure Autism Now, and legislation such as the “Combating Autism Act” show how the neurotypical narrative can rip away autonomy from autistic individuals. Ne’eman also cites the need for more supports for families and individuals with disabilities; “by improving special education and funding for transition and adult supports, we can reduce the perceived and actual difficulties on families. On the whole, it is clear that the neurotypical community needs to step aside to allow the autistic community to share and explore their narrative.
Word Count = 1024
I hereby pledge upon my word of honor that I have neither given nor received unauthorized help on this work – JML
Works Cited
Ne’eman, Ari. “Dueling Narratives: Neurotypical and Autistic Perspectives About the Autism Spectrum.” The Society for Critical Exchange , 2007, case.edu/affil/sce/Texts_2007/Ne’eman.html.
Mackenzie’s Final Paper
Mackenzie King
ENGL 384: Section 01
Dr. Foss
28 April 2020
The Autistic Voice
Defining autism causes much debate among self-advocates and medical professionals. The Oxford English Dictionary defines autism as “a condition which has its onset in childhood and is marked by severely limited responsiveness to other persons, restricted behaviour patterns, difficulty with abstract concepts, and usually abnormal speech development” (Rodas 9). The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) gives an even more unclear definition of what it labels as “Autism Spectrum Disorder” as it gives medical professionals diagnostic criteria in the form of rigid categories. The problem with these diagnostic criteria is that autism presents itself differently among individuals. Some people with autism will show very little or no verbal communication while others may have perfect verbal skills. Many of the definitions or attempts to label autism come from sources who do not fully understand the autistic experience. Ari Ne’eman’s “Dueling Narratives: Neurotypical and Autistic Perspectives About the Autism Spectrum” and Julia Miele Rodas’ Autistic Disturbances: Theorizing Autism Poetics from the DSM to Robinson Crusoe demonstrate how damaging labels are continuously promoted as people with autism are placed in the background of these discussions.
Autistic writers will typically describe autism by feelings, experiences, and practices instead of through rigid categories. Then, autism is “what it feels, does, experiences, and says” (Rodas 10). This puts the autistic person at the center of the definition, not just categories of diagnostic criteria. Rodas notes that autism scholars will usually resist strict definitions of autism because no one truly knows what autism is. While autism is likely physically located in the body, there is no blood test or specific genetic marker that signifies autism. In this respect, the autistic body cannot be separated from the autistic voice. In “Dueling Narratives: Neurotypical and Autistic Perspectives About the Autism Spectrum” Ari Ne’eman states that “in a society that values equality as a means of social justice, the idea of each individual created equal is often misinterpreted as each individual created the same” (Ne’eman). Self-advocates continue to strive for support and acceptance for people with autism in society. Disability is thought of as a social construct. According to this social model of disability, the label of disability then reflects how an individual is able to function in a specific environment and is then not related to any intrinsic characteristics related to the individual. This means thant people labeled as having a disability are being defined by their relation to the rest of society, taking the ability to form an identity away from these individuals.
When it comes to discussions about autism, people with autism are generally not in the center of the discussion. Films like Autism Every Day (2006) furthers the idea that autism happens only to people surrounding the person with autism. This places all of the power for form identity in the hands of non-autistic hands and not in the individual. Lauren Thierry, the producer of this film, criticized President Bush for taking a photograph with a young man with autism who scored repeatedly during a high school football game and received a lot of media attention because of his talent. Theirry stated that this sent a message that people with autism will be okay as long as they can find a certain skill in which they can excel; however, she had also told the parents depicted in her film not to provide any type of therapy for their children or maintain their homes in the few days leading up to filming. This then promoted the idea that autistic children can be seen more as tradegies, further encouraging the notion that autistic children will fall into one of two categories: tragedies or prodigies. This is not an accurate representation of the reality of most people with autism, but films such as Thierry’s Autism Every Day are motivated by fundraising instead of accurate portrayals of living with autism (Ne’eman).
Jenny McCarthy further promoted the idea of autism as pathological with her memoir Louder Than Words (2007). In her book she portrays autism as a tragedy when her son receives his autism diagnosis. Actions she previously thought were cute soon became signs of autism and represented something she now views as tragic. Because of her high profile she became popular in autism discourse, furthering the idea of autism as pathology. The describes learning about her son’s autism by saying that all of the “things I’d thought were personality traits were in fact autism characteristics, and that was all I had. Where was my son, and how the hell did I get him out?” (McCarthy 66 qtd. Rodas 16). Again, this reaction illustates the inability to look at the individual. Jenny McCarthy’s entire view of her child is altered by his diagnosis. Her son is not trapped by his diagnosis, it is a part of his identity. When the people around someone with autism try to create a label or define who that person is based on the diagnosis, it takes that person’s voice and individuality. Autistic people, just like people who do not have autism, are able to express themselves in a variety of ways and through a variety of identities (Rodas).
The diagnostic criteria present austism as something that is categorical and easily defined, but that is not the reality for many people with autism. Autism affects people differently. These categorizations make it easier to try and place people within the label of autism, but this then takes the voice away from those individuals. Organizations, such as Autism Speaks, or films such as Lauren Thierry’s Autism Every Day continue to set the tone that autism is a condition that needs to be treated. These are not accurate representations of life for many autistic individuals and futher promote the labels given to autistic individuals from non-autistic sources who do not truly understand the autistic experience. Self-advocates are correct in their pushing to be at the center of discussions on autism, not merely placed into the background while non-autistic people place labels and make assumptions about what it means to be autistic.
Word count: 1004
I hereby declare upon my word of honor that I have neither given nor received unauthorized help on this work
