Carly Rose Hughes
Dis/Lit Final, Prompt #2
Dr. Chris Foss
April 30th 2019
Word Count: 1,200
The True Definition and Value of Autism: A Descriptor of Unique Traits
Prompt: (2) a thesis-driven argument relevant to disability studies that engages substantially with one or two of the theoretical pieces from the final unit.
Autism shows itself in different ways with varying levels of severity among the people who identify as having it. This is because autism encompasses a spectrum of traits, making it a sort of umbrella term for behavioral and social functions that society perceives as deviating from the “norm”. Because of this, people with and without autism alike can have differing experiences with autism, which can often lead to conflicting views and opinions of what an autism diagnosis means. This confusion about autism is made worse by the fact that Autism is hard to diagnose because of its lack of concrete , reliable characteristics. There is no agreed upon definition of autism even in a medical sense , causing many people, especially parents, to view autism as a disease that needs to be cured for a child to have a happy and successful life. This attitude is shown in Julia Rodas‘s Introduction and “Un-Conclusion” of ‘Autistic Disturbances’ ,with descriptions of PlayBoy model Jenny McCarthy’s parenting of her child with autism. Through analysis of her parenting choices combined with other autistic scholar’s view points, it is clear that it is not autism is not what needs to be cured for people with autism to be successful, but instead it is society’s view and treatment of people with autism that needs to be rethought. In this way, if Autism’s definition were societally re-framed away from its negative and nebulous medical connotations and instead viewed as a valuable personality trait which makes a person who has it who they are; harmful misunderstandings of autism would be eradicated and relationships between people with and without autism could be enhanced.
To fully understand society’s perpetuated misconceptions of Autism, it is imperative to have knowledge of the uncertainty of diagnosis which contributes to a general societal fear of a diagnosis. Autism is problematically associated with medicine in the way that people assume that since it is diagnosed, it must be a disease, and if it is a disease, it must be cured. However, “even at the beginning of the 21st Century, we don’t know what Autism is,” (Rodas/Murray). This is firstly because autism does not show up as a concrete, visual, or biological difference in any medical test. Instead, diagnosis is based on analysis of a person’s behavior. Author of Autistic Disturbances backs this up, saying: “..we have no way to measure it [Autism] but by its external manifestations,”. Knowing that diagnosis is closely tied to behavioral qualities, it is clear that Autism “…belongs to and is entwined with individual autistic identities”,(Rodas, Autistic Disturbances) meaning that there are many types of traits that can be associated with autism, and different types of people can have it. This reality is most likely because autism is part of a person’s individual identity, and is just a way to describe behaviors that can be seen as unique. As more people come to a doctor seeking an explanation for certain behaviors, more behaviors and actions become associated with a diagnosis of autism, contributing to further confusing nebulous-ness, which contributes to a higher amount of problematic fear of autism.
The description of Jenny McCarthy’s view of her son Evan’s autism diagnosis demonstrates this problematic fear of diagnosis, because her view directly ties fear of diagnosis to a fear of her son’s personality by subconsciously demonstrating how autism is a part of his identity. McCarthy says that her son was labeled autistic based on “…the boy’s play in the doctor’s office,”. (Rodas, Intro to Autistic Disturbances) This shows how tied to behavior diagnosis is, proving assertions from the last paragraph. Rodas continues : “When the doctor reveals to [McCarthy] that such behavior is characteristic of autism, McCarthy, her “heart shattered” observes “Everything I had thought was cute was a sign of autism,’”. This is obviously a reaction of grief in McCarthy, however, it is not based in reality. Her feelings imply that her son’s value does not exist anymore because his personality is one of what she perceives to be disease. In this way, she is grieving “…over the loss of the normal child [she] had hoped and expected to have.” (John Sinclair ‘Don’t Mourn for Us’) However, she had not thought that her son’s characteristics were bad or significant of sickness before the diagnoses, which drives home how flawed the associations that people without autism make are when it comes to a diagnosis of autism. Because Evan’s diagnoses was so clearly tied with his personality and his diagnoses was “heart shattering” to McCarthy, it seems that this mother it seems that to McCarthy, Evan’s autism is significant of Evan’s lack of personality, or at least lack of a valuable one. In this way, it is obvious that when addressing autism behavioral functions in lieu of a diagnoses, it is often times the parent’s conception of what autism is that needs to change so that a person with autism can receive the most fulfilling relationships with the people around them possible, and therefore the most fulfilling life possible. John Sinclair supports this by saying that “This grief over a fantasized normal child needs to be separated from the parent’s perceptions of the child they do have: the autistic child who…can form very meaningful relationships.. If given the opportunity,”.(Sinclair, Don’t Mourn for Us).
Since autism is a description of someone’s behaviors and personality, it is an unalienable part from who they are. An autistic person’s actions are natural to them, and are worthy of love and support, especially from their parents. The autistic part of their identity is essential to making them who they are. A quote that captures this idea can be found in the novel Troubleshooting by Selene dePackh, when main character with autism Dax/Scope describes her view of herself : “Autism is what I am…it’s not something I can beat any more than I can beat being small…”(dePackh, page 211). So just like a physical characteristic, autism is just another valuable aspect of a person’s identity. In this way, Evan McCarthy still had the same traits with and without the autism diagnosis: the autism diagnosis does not change who he is or what value he should have. He is still the same “cute” child his mother Jenney thought she had. All of this is directly supported by the main idea of John Sinclair’s piece “Don’t Mourn For Us”, saying :
“Autism isn’t something a person has, or a “shell” that a person is trapped inside. There’s no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person–and if it were possible, the person you’d have left would not be the same person you started with.”
If society’s view of autism wasn’t viewed through a misconstrued medical lens; parents such as Jenny McCarthy would not be as affected by their child’s autism diagnosis. Parents would understand that it autism is not a trait they can free their child of, but a trait that deserves love and support through realization does it is part of who their child is.
Citations
dePackh, Selene. Troubleshooting: Glitch in the System: Book One EBook: Selene DePackh: Kindle Store. Reclamation Press, 2018
Don’t Mourn For Us, John Sinclair. Autism Network International Newsletter, Our Voice, Volume 1, Number 3, 1993. Referenced in 1993 International Autism Conference Speech. Accessed online at : [http://www.autreat.com/dont_mourn.html]
Julia Miele Rodas, “Introduction” and “UnConclusion—Because the Butterfly: Autistic Infinitudes” from Autistic Disturbances: Theorizing Autism Poetics from the DSM to Robinson Crusoe . Accessed on Class Website, Week 15 Readings.
