Olivia Bridges
The medical model for diagnosing autism is problematic for those who have autism. In order for an individual to receive an autism diagnoses their parents have to answer a series of questions. In cases of autism spectrum disorder, the individual may have to opportunity to speak with the diagnostician; however, when a doctor has to assess someone who is non-verbal, the doctor conducts the diagnoses through conversations with family members. As a result, the patient’s story is typically omitted. This can be true of individuals with autism spectrum disorder as well, but tends to be less of the case. The omission of the patient’s story is problematic because it takes away the voice of the autism community. According to Autism, there is no clear definition of autism, so people’s perceptions of autism derives from the medical model and how doctors diagnose autism. Thus, most people view autism in a negative light because doctors use curd language to describe autism, such as inflexible and abnormal. The use of said language leads people to believe autism is a problem that must be cured, but that conclusion is made without the consent and voice of the autism community. When an individual with autism receives an autism diagnoses, their very actions becomes defined by their autism and they lose their agency. The medical model in which doctors use to diagnose autism is problematic because of the association of negative terms and the assumption that autism is a deficiency that must be cured; therefore, resulting in a counterproductive mindset in parents who blame autism on their child’s ever action and only see the autism rather than the person (Murray).
Due to the lack of biological evidence of autism, doctors diagnose autism on assumptions of what they consider to be normal; however, the current diagnostic model typically omits the ‘patient story,’ which portrays autism as a problem. “It remains true, however, that the frequent absence of the ‘patient story’ for the individual with autism the narrative is then supplied by the diagnostic process method itself, which inevitably fills in the gaps with which it finds itself faced (Murray 13).” According to Autism, Murray asserts it is important to understand the concept that autism is deficiency or a problem is built into the diagnosing process itself. When a diagnostician is diagnosing an individual with autism, they do it off of what is considered to be normal. The favoritism towards normality can be seen in the questions asked in the diagnosing process. Developmental psychopathologist, Simon Baron-Cohen outlines a list of questions that is traditionally asked to parents when diagnosing their child. One of the questions is as follows: “Do they show a lack of normal social awareness (Murray 11)?” However, Baron-Cohen does not define what he considers normal social awareness. The term normal is such an ambiguous word and it is set by societal expectations and standards. By establishing the lack of normalcy in an autism diagnoses, individuals with autism are immediately ‘othered,’ which puts them at a disadvantaged because of the already apparent lack of the ‘patient story.’ The assumption of the lack of normalcy takes away their agency and their ability to share their story in the future because their ‘othered’ status discredits them (Murray).
Diagnosticians define autism using harsh language such as deficient and impaired; the use of negative language is problematic because people base their assumptions about autism on the doctor’s descriptions, leading them to believe they need to cure autism. Due to the lack of a clear definition of autism, according to Murray, people base their assumption about autism on the medical model; however, the diagnosing process has flaws and is full of negative connotations. “Looking back on Baron-Cohen’s list, it becomes readily apparent that it is full of descriptions of ‘difficulties,’ ‘limitations’ and assumptions about behavior being ‘wrong’ or deviating from that which is considered ‘normal’ (Murray 13).” By establishing those with autism exhibit behaviors that are wrong or deviant, doctors are setting up people with autism to be treated as lesser. The Diagnosis and Statistical Manual of Mental Disorders or DSM serves as an aid to diagnosticians; however, like Baron-Cohen, the guidelines contains the same negative language. In the DSM-IV, “Autism Disorders” it describes autism using numerous words that establish autistic individuals as lesser. The list of descriptors includes words such as impairment, failure, delay, lack of, inflexible, restricted, and abnormal. Further, organizations that are supposed to advocate for people with autism use the same language as well. The Autism Society claim people with autism may appear deaf and get upset for no apparent reason. They also suggest when interacting with someone who has autism to speak slowly and use simple language. While, the Autism Society is trying to raise awareness, their assumptions about autism stems from the assumption autistic individuals are incapable because their knowledge about autism derives from the diagnostician’s definition of autism. Furthermore, parents also base their assumptions about autism on the same medical model. All of which is problematic. It allows parents to blame their child’s every action on autism while ignoring the cause of their upset and promotes eugenics because it establishes autism as a problem that needs to be cured (Murray).
The problematic language and diagnostic definition of autism results in autistic individuals and their actions to be defined by their autism. According to Melanie Yergeau, “Introduction: Involution” from Authoring Autism, upon receiving her autism diagnoses, people—specifically her mother—view her autism as the root of all of her behaviors. “What autism provided was a discursive framework, a lens through which others could story my life….This, my body, this was autism–and suddenly, with the neuropsychologist’s signature on my diagnostic papers, I was no longer my body’s author (Yergeau 1).” In Yergeau’s article, she discusses the matter of autistic poop. She recalls a story her mother tells about how she used to have poop up to her neck as a baby. After Yergeau’s received her autism diagnoses, her mother associated the poop incident with her autism because autistic poop is a common discussion within the autism community; however, it is not exclusive to autism for babies to be covered in poop or even to play with it. It is not an atypical behavior, yet because Yergeau has autism, her mother views it as atypical and a result of her autism (Yergeau). Additionally, in Autism, the International Classification of Diseases provides a description of childhood autism. In the description, ICD associates temper tantrums and phobias with autism. However, like poop, phobias and temper tantrums are not excessive to autism, but as a result of the association when an autistic individual throws a temper tantrum, instead of trying to understand what is wrong, people typically round it up to the individual’s autism. In doing so, people with autism lose their agency and their ability to express themselves (Murray). For example, in William Faulkner’s The Sound and The Fury, while it is not confirmed that Benjy has autism, he experiences the same lack of agency because people define him by his disability. When Benjy burns his fingers, everyone immediately tell him to hush even though his reaction is completely valid. However, due to his disability, his feelings and pain are invalidated and written off as white noise. Any time Benjy attempts to express himself, he is told to hush because his family does not believe he is capable of understanding the world around him; thus, once again, another individual is treated as lesser because of preconceived notions about disability (Faulkner).
The current model for diagnosing autism is flawed and is in dire need of redefining. When an individual is diagnosed with autism, the medical model sets them up for failure. Inevitably stripping them of their agency and voice. As a result of the negative language associated with autism, they are treated as lesser and people view them as impaired and abnormal. When doctors diagnose an individual with autism, they face dehumanization and an invalidation of their feelings. The current model for viewing autism needs to change because it promotes eugenics and devalues autistic individuals and their experiences. Additionally, parents need to stop blaming their child’s every action on autism. Instead they should try to understand why their child is upset or why their child is acting a certain way rather than just blaming it on the autism. However, people with autism will be unable to regain their agency until the negative language in the medical model that promotes said mindsets is eliminated. Change needs to be done at the diagnostic level because it impacts how people base their assumption about autism.
I pledge
Word count: 1,441
Works Cited
Faulkner, William. The Sound and the Fury. Penguin Books, 1964.
Murray, Stuart. Autism. Routledge, 2012.
Yergeau, Melanie. “Introduction: Involution” from Authoring Autism. PDF.
