Parent Reaction to Autism Diagnosis- Jim Sinclair

Brieanna Smith

Professor Foss

English 384

4 November 2021

Word Count: 1,472 Words

Option one: a thesis-driven literary analysis focused on one aspect of one or more of the literary texts from the final autism unit.

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

In our last section of English 384, we focused primarily on works that focused on Autism either directly in our theory pieces or subtly in our novels and poems, like An Unkindness of Ghosts or “Apologies to My OB-GYN.” Autism is not easily defined and many of our theory pieces focus on the idea that the best definition of what Autism is, is based on the “lived experience,” rather than a scholarly and rigid analysis. In this paper we are going to analyze Jim Sinclair’s piece, Don’t Mourn for Us with the focus on the intensity of a parent or parents’ reaction and treatment to a child’s autism diagnosis. Jim Sinclair breaks his argument down into three main sections that all have an interrelated connectedness to the negative reaction of a parent.

The introduction of this piece highlights the concept of the perception of “normalcy” in which parents hope and desire for children to achieve. There are a few primary ways of looking at this idea and that either include children not meeting parents’ expectations for something that is not controllable and are often mistreated for it or we get the other perspective where parents are concerned and fear for their child on the autism spectrum because of how cruelly society treats people who have an autism diagnosis or any other disability related diagnosis.

 The first section of Jim’s Sinclair’s Piece, “Autism is not an appendage,” focuses on the impact autism has on a child who is diagnosed in their every experience. “Autism is a way of being. It is not possible to separate the person from the autism,” and plays a prominent role on “every aspect of existence” for the child (Sinclair, pdf). What parents don’t recognize is that the lived experience that children on the autism spectrum has will be affected by autism. Jim Sinclair, in this section, extends his argument further in mentioning how parents often wish their child did not have autism. This is an appalling idea, and one would hope that most parents would not engage in this line of thinking. Wishing for a normal baby is interpreted in this case, as wishing that child with an autism diagnosis to no longer exist. This is truly horrific and relates back to the reasoning behind eugenics logic. If a baby or child is diagnosed with autism parents may experience a level of shock or concern, but these emotions should not hinder the parent’s ability to love and care for their child and this is what Jim Sinclair is trying to bring to light in this section of his piece. Like a first-time parent’s fear of having and raising a child, an autism diagnosis may instill a similar fear of the unknown. This fear of the unknown is what often causes parents to either make incredibly detrimental mistakes in raising their child or instill a drive that will encourage them to step up and do what ever is best for their child. Ultimately, how the parents react and treat their child is one of the main indicators of the personality of the child when they grow up. A warm and compassionate family environment is crucial to growth of a child at any age and no matter whether a child is neurotypical or neurodivergent.

“Autism is not an impenetrable wall,” is the next section of Jim Sinclair’s piece and this focuses primarily on the connection between the child on the autism spectrum and their parents. When parents initially receive the diagnosis that their child has autism, this brings up the parent’s fear of not being able to communicate with or relate to their child. Sinclair brings up the fact that parents of children who are on the autism spectrum need to be willing to take a few steps more to connect with their children. Jim Sinclair advises parents to “Approach respectfully, without preconceptions, and with openness to learning new things, and you’ll find a world you could never have imagined” (Sinclair, pdf). These lines encourage the parents of children with autism to actively participate in potentially unconventional ways of communication. An extended metaphor in Sinclair’s argument describing a parent communicating with a child who has autism is like having a lengthy conversation with someone who does not speak the language in a different country. This is both a problematic and progressive way of viewing this form of communication. One it institutes the idea that a child with autism is going to be ostracized based on the way in which they communicate, but it also encourages society and parents to be more open-minded to deeper and more interpretative ways of communicating. One reason why parents often react negatively to an initial diagnosis is because they want their children to be like them and accepted by the standards of society. Unfortunately, we live in a society that deems autism as a “illness or condition that has causes and needs to be solved.” Since parents have spent a considerable amount of time formulating their role in society, an autism diagnosis throws a curveball of sorts in what they pictured for their families. As mentioned earlier, parents want to be able to relate, pass on knowledge, and find important connections to their children. Compassionate parents of children on the autism spectrum will need to be more cognizant of how their children are trying to communicate. Sinclair does admit that parents and children on the autism spectrum may experience disconnects, but what is important is that these parents should be trying to connect and converse with their children in a positive way.

The final section in Jim Sinclair’s Don’t Mourn for Us, is labeled “Autism is not death,” and this last part describes the initial reaction of parents and has a major connection to the title of this piece. In this section, Sinclair brings up the idea of how some parents who receive the diagnosis that their child or baby is on the autism spectrum compare their children as to being still born. As Sinclair points out, children on the autism spectrum are not dead and it is tragic that some parents make this comparison. He mentions it is about “shattered expectations,” felt by the parents in their responses to a child with autism (Sinclair, pdf). Parents and soon-to-be parents often have a glamourized picture of what they want for their families to be like shown through many forms of entertainment. It is naïve to think this way and is part of the reasons why parents are often shocked to learn their child may be on the autism spectrum because of how society views “the normal family.” In the following lines, “Grieve if you must, for your own lost dreams. But don’t mourn for us. We are alive. We are real. And we’re here waiting for you,” Jim Sinclair establishes ideas of personhood and or advocacy that parents who react negatively do not realize (Sinclair, pdf). This line focuses on how children on the autism spectrum may have to advocate for themselves even with their parents. Lost dreams connect back to shattered expectations of the parents and how parents must move past it, or it is going to hurt their children in the long run. The perfect family is non-existent, and this false sense of reality or expectation is why the title of this piece is Don’t Mourn for Us.

To conclude, Jim Sinclair focuses primarily on the reaction of parents to their children in the experience of autism, how it affects communication and relatedness to their child, and the fact that an autism diagnosis is not a death sentence or something that should diminish the quality of life. The intention of this essay was to highlight the negative mentality that parents have to an autism diagnosis of their child, what the reasoning is behind this mentality is, and the validity of this reasoning. One critique of Sinclair’s argument is the use of “alien” and in most of our theory pieces, this a problematic portrayal of someone on the autism spectrum because it diminishes someone as a person. Overall, Sinclair’s piece Don’t Mourn for Us,” is structured in a way in which a child who is on the autism spectrum is speaking to a parent and this perspective strengthens and enhances the quality of his argument in responding to a parent’s reaction to an autism diagnosis.

Works Cited:

Sinclair, Jim. “Don’t Mourn for Us.” ANI, 26 June 2002. Web. 05 Dec. 2021.

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