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