“To Be, Or Not To Be, That Is The Question:” Or Is It?
The following essay was written as an assignment for my BYU-Idaho ENG106 course, which I am taking as part of the Pathway Program. I present it here, as suggested by a friend, for your comments and thoughts. My thesis developed as I contemplated a question that was posed to me on another post. The answer to the question is far too detailed to present here in one piece so I offer this as a first course.
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“Autism is the one medical condition I can think of where no one can agree on the legitimacy of any of its so-called advocacy groups” (Robinson, 2009). One side clamors for a cure, while just as loudly the other side decries the need to be cured, and somewhere in the middle caregivers plead for a little of both. In every facet of the autism debate there is no middle ground.
This argument reminds me of a scene from The Fiddler on the Roof. As Perchik, a Marxist, encourages a group of Anatevka villagers to be concerned with current events, Mordcha disputes the idea. Why should he trouble himself with what is happening in the world; if the world wants to fight and argue, “Let the outside world break its own head.” Tevye agrees with Mordcha. Perchik counters, “You can't close your eyes, to what's happening in the world.” Tevye agrees with this too. Avram, turning to Tevye, says, “He's right and he's right? They can't both be right.” Without a moment’s hesitation, Tevye concurs, “You know, you are also right.”
So what is the answer? The Harvard Business School, when considering complex issues, applies this “fundamental truth: Rarely does asking the wrong question yield the right answer” (Christensen, 2012). The key then is not in the answer, but in the question. No longer should we ask questions in terms of “cure;” rather, we should ask in terms of “treatment.”
Cure, by definition, is bound in language that speaks of restoring health “in a way that eliminates or rectifies…something objectionable or harmful” (Merriam-Webster, 2012). Treatment, however, is not restricted solely to patient care “to combat, ameliorate, or prevent a disease, disorder, or injury” (Mosby’s, 2009); it also conveys our very manner, conduct, approach, and “behavior toward a person” (New Century, 1931).
According to research, around 15% of the autism population has what is called "secondary" autism, “in which a chromosome abnormality, single-gene disorder or environmental agent can be identified” as the cause. The remaining 85% have ‘idiopathic’ autism, whose cause is completely unknown (NHGRI, 2012). What is known is that autism is considered a spectrum disorder—think rainbows or prisms—because it illustrates, for those with high IQ's to those with mental retardation, an array of developmental delays and disorders affecting social, communication, motor, and language skills.
Because the cause is unknown, and all individuals are as different as they are the same, treatment allows for the acceptance of all causes, all remedies, and all therapies for autism. Much like the circumstances of the mid-mission explosion on Apollo 13, treatment doesn’t have to know what caused the problem to secure and maintain safety, or enrich life. Through the approach of “working the problem,” NASA applied solutions to each symptom from the facts they had, changed treatment when initial remedies were ineffective, found solutions, and in time eliminated the initial cause—all without ever disregarding their distinct character and individuality as reflected in Skylab, Challenger, Hubble, or Voyager (NASA, 2001).
Autism carries with it a variety of labels, which aren’t really diagnoses or official terms, but generalities. These labels make it easier for one to understand the limits or abilities of the individual ranging from high functioning to low functioning, or classic autism. On the debilitating extreme is sensory dysfunction with acute sensitivity to “light, sound, touch, taste or smell” such that “crowds, bright lights or loud noises can be overwhelming, and painful” (Rudy, 2010). Amid this hypersensitivity, individuals may also exhibit “self-stimulatory behaviors [to] include self-injury [and] may include…mood disorders” (Rudy, 2010). From this perspective, treatment pleads for medical remedies to relieve, correct, and prevent the torturous, harmful, and debilitating conditions. From the higher functioning side of the spectrum, where sensory difficulties may be limited to mild speech delays, personality quirks, inability to maintain eye contact, engage in extended conversation, or pick up on social cues, they say, “We don't need to be cured. We just need tolerance and understanding” (Robinson, 2009). Their autism is a part of them, their identity, and as such “should be respected as a normal human difference” (Warber, n.d.). To that end, treatment is in full accord and accepts and acknowledges them for who they are.
Some condescendingly state that parents who desire a cure are in effect saying, “ 'I wish the autistic child I have did not exist and I had a different (non-autistic) child instead'…[their] greatest wish is that one day we will cease to be and strangers you can love will move in behind our faces" (Sinclair, 1993). Nothing is further from the truth; this offensive view is founded in the narrow-minded limits generated when speaking in terms of cure rather than treatment. Compassion, and nothing less, compels parents to seek everything that treatment affords by way of tolerance and medicine. While maintaining the identity of their children, parents want proportionate doses of acceptance instead of stares, understanding instead of ridicule, relief instead of suffering, and joy instead of agony. I know, for I am a parent of a child with autism.
The question of treatment isn’t a game of semantics. Unlike the parochial cure, treatment recognizes that there is more than one side to the story—a story that is as varied as there are ways of expressing autistic tendencies, characteristics, traits, and personalities. It pushes for therapeutic techniques, all the while requiring deportment in the approach. “Treatment is not to label or change a person’s fundamental personality” but to strike a balance between a life free of incapacitating disabilities and one of self-expression in a neurologically diverse “welcoming world” (Masland, 2005).
 “Working the problem” was a precept for NASA in how it approached and understood technological relationships.
Christensen, C. M. (2012). If Harvard Business School were a religion, it could be Mormonism. Washington Post. Retrieved from http://articles.washingtonpost.com/2012-05-11/national/35455387_1_mormon-leadership-wrong-question-lds-church
Cure. (2013). In Merriam-Webster’s Dictionary. Retrieved 31 January 2013, from http://www.merriam-webster.com/dictionary/cure
Dumoulin, J. (2001). Apollo 13. NASA.gov. Retrieved 31 January 2013, from http:// science.ksc.nasa.gov/history/apollo/apollo-13/apollo-13.html
Jewison, N. (Producer & Director). (1971). The Fiddler on the Roof [Motion Picture]. United States: United Artists.
Masland, M. (2005). Children in the Grip of Autism. NBCNEWS.com. Retrieved from http://www.nbcnews.com/id/6901860/ns/health-mental_health/#.URB9B1oi4h1
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Robinson, J. E. (2009). The ‘Cure’ for Autism, and the Fight Over It. Psychology Today. Retrieved from http://www.psychologytoday.com/blog/my-life-aspergers/200910/the-cure-autism-and-the-fight-over-it
Rudy, L. J. (2010). What is Severe Autism. About.com. Retrieved from http://autism.about.com/ od/autismterms/g/What-Is-Severe-Autism.htm
Sinclair, J. (1993). Don’t Mourn For Us. Our Voice, 1(3).
The New Century Dictionary. (7th ed.). (1931). New York, NY: D. Appleton-Century Company
Warber, A. (n.d.) Should Autism Be Cured. LoveToKnow.com. Retrieved from Http:// autism.lovetoknow.com/Should_Autism_Be_Cured