OPTION 2: Thesis driven paper involving one or two works from the final autism unit.
Not long ago, Autism would have been considered an institutionalization-worthy disability. The disability itself is not fatal nor does the diagnosis mean that the individual will be nonverbal, violent, and antisocial. They are labeled, rather ambiguously, as being “different”. People with autism are not burdens- they are just treated that way.
Jim Sinclair, an autistic scholar, author, and proponent of disability studies, outlines the traditional and antiquated notion often surrounding the disability in his piece Don’t Mourn for Us. Sinclair touches on the way his parents reacted to his life and to his disability. He recognizes that when parenting an autistic child, there are inherent difficulties and hurdles. However, Sinclair argues that the beauty and rarity of the autistic child should outweigh the apparent challenges. It is also worth noting that any child will have their inherent difficulties, so we must treat each child with the same protection and esteem. Sinclair’s understanding of autism needs to be grasped by the neurotypical community. Acceptance of Sinclair’s perspective will allow us to move forward from these dated beliefs.
Apologies to my OBGYN, a poem written by Rebecca Foust, is also about the experience of parenting a child with autism. Instead of identifying the personal and familial model relating to autistic children being labeled as a “burden”, Foust connects it to the medical model. Both the medical and personal perspectives presented in the respective pieces convey multiple unfair stigmas, the most notable being that people with autism are only a burden, and nothing else. This is simply not the case, as argued in both pieces. Sinclair argues that an autistic human life is not death, whereas Foust asserts that death is an integral part of the human experience. Life is not death, but death means that one has lived. In dying, the only power granted to Foust’s premature child is that it is no longer a burden because it is no longer living, taking up space, resources, or money.
It is interesting and worth debate to examine Sinclair’s use of the word “alien” to describe people with autism. This term is often used to illustrate the dissimilar processes of a neurodivergent person. It has overtones of explaining them as a whole other life force, from a distant planet. If anything, this furthers the impenetrable wall Sinclair hopes to avoid.
An autistic life, even while still in the womb, is thought of as a burden. Even in communities of pro-choice minded people, it is often argued that aborting a child for the sole reason of autism is unjust and offensive. With this in mind, it is easy to understand why Sinclair would feel the need to specifically detail that autism is not death. After birth, the child still faces marginalization in a way that a neurotypical person could never comprehend. Parents often list the most traumatic experience of their life as the moment they discovered their child had autism. This forces the child into the role of an agonizing burden- a treacherous bridge the parents, not the actual child, must cross. This notion is clearly offensive and derails the recent movement of the disability positive narrative.
Not only does Sinclair explain that autism is not death, he also verifies it as “not an impenetrable wall”. Essentially, this discounts the idea that children with autism have no proper means of communication with neurotypical people, but rather, their means are simply different and more complex. When the able bodied parent, or even community, views a disabled person’s way of thinking as “different” and therefore not useful, this removes once again, the hard work of protesters wishing for inclusivity and to omit the notion of burdens.
The personal connection to society relates to the parenting of a child with a disability. Sinclair’s piece best captures the thesis of this paper. People with autism are treated differently in almost every way possible, simply because giving them improper resources is easier, and cheaper, than allowing them to explore more expensive and potentially more helpful routes. Parents, even the ones who consider themselves to support their autistic child, often marginalize them in a way the rest of society is incapable of doing. Being treated as a burden by society is one thing, but being treated as a burden by your parents is another thing altogether.
While some may wish to believe we have come far in integrating neurodivergent people properly in society, we still have far to go. We cannot dream of including people with disabilities the way they should be included when it is already hard enough to convince politicians that accessibility is essential, or to doctors that a “difficult” patient with autism should be treated with the same care and respect as a neurotypical patient. In Fousts’ deeply sarcastic apology, it is difficult to grasp the extent to which neurodivergent patients are mistreated. Fousts explains that her child, born too early and with bountiful and expensive medical issues, was treated as a burden by medical staff. She was even told she was wrong and too demanding in fighting for the baby’s life; the hospital’s resources are better used on a neurotypical baby.
The medical structure of modern society does little to encourage or uplift people with disabilities. This is extremely prevalent in Foust’s “pain in the ass” description of the care of her son. The first three stanzas start with “sorry”, reinforcing her sarcastic demeanor. If this child were able bodied, there is no doubt the mother would not even feel compelled to apologize, even if it was contemptful.
Another essential aspect of the medical model is the connection to costs. Because this is a capitalist society, money makes the world go around. In cases like Foust’s child, it is glaringly apparent that the doctors and nurses cared more about the finances than the life itself. This does not account for the beauty of life.
In conclusion, autism is not death. This overlying assumption has caused much unrest in the disability studies field, as well as the literal homes of the autistic community. If parents and medical professionals continue to view their autistic child as a fiscal responsibility rather than a human, not alien, with a heartbeat worthy of care, nothing will change. There are many things that autism is, but then again, there are many things that autism isn’t. Autism is a part of the person- it is not something in need of a cure or to be viewed as simply a hurdle to overcome. Autism is life.
Sinclair, Jim. “Don’t Mourn for Us.” Don’t Mourn For Us, 1993, http://www.autreat.com/dont_mourn.html.
Foust, Rebecca. “Apologies to My OB-GYN.” Fishouse, 28 June 2018,
“I hereby declare upon my word of honor that I have neither given nor received unauthorized help on this work.”