Autism: Understanding the Disparity

June 1, 2009
By Sulagna Misra BRONZE, Basking Ridge, New Jersey
Sulagna Misra BRONZE, Basking Ridge, New Jersey
1 article 0 photos 0 comments

Amanda Baggs’s YouTube video starts out with a shot of her from behind as she rocks back and forth, flapping her hands, a dark silhouette against the bright sunshine streaming out of her windows. Her voice reverberates into the scene, a long humming procession of vowels that continues throughout the first half of the video. This consists of clips of her playing with a slinky, at an angle pointed down the undulating spiral; knocking a wire loop around a door handle, reveling in the loud, singular sound; and petting a computer keyboard, focusing on the sensation of her fingers rippling over the keys. That vocal stream of sound links the video clips together like the chain of a beaded necklace, allotting each video clip its significance while keeping them aligned with a singular concept.

For these are not a series of ramblings and weird meaningless gesticulations for the viewer to politely ignore, nor are they a set of symbols and significant movements for them to interpret; they are a demonstration of how Amanda interacts with her environment. It’s her preferred form of self-expression and communication with the world around her. Through the use of a computer-automated voice similar to Stephen Hawking’s, Amanda explains that she feels that her status as a person is reduced because not only does she use a language that is not widely understood, people also don’t even attempt to understand or recognize it as such. Too often, the refusal to follow conventional behavior creates a barrier for communication. Because she doesn’t interact with the world in the same manner as everyone else, she is consigned as inferior. Diminishing this particular part of her identity suggests a societal bias on how we communicate and a constricting perspective of normality.

The way that autism is diagnosed is connected to one of the main ideas about social interaction: the “theory of mind.” There are several other very intensive tests that go along with the diagnostic process, of course: “neurological assessment[s] and in-depth cognitive and language testing”; but “mentalizing,” the concept of being able to cognitively process empathy, is a distinct factor in autism testing. Autistic people are said to have a certain “mindblindness,” in which they are unable to understand or recall subtle language cues; thus disenabling them to process “moral judgments or biological motion” (Miller 1). Such tests are proctored at a very young age, because autism can affect a child extremely early. This means that the differences become noticeable very soon in the child’s life. This is how people are bestowed with a distinct label to note their divergence from the norm. Pointing this out is a way to include them within the context of society when they are unable to fit neatly in the structure. According to Bob Wright, the founder of Autism Speaks, his grandson Christian had been advancing in the traditional manner until he turned two, when instead of becoming a “world-beater” like his grandfather, he became “a crisis” (Jardine 1). He adds, "The doctor told us it was normal to regress when a new sibling arrives…We lost nine months'' (Jardine 1). Wright is suggesting that when autism manifests in a child, there is only certain period in which the child can still be reached through the cloud of their disease to prevent it from overtaking them completely. He continues, "Christian was having tantrums and losing speech. These warning signs should have been picked up” (Jardine 2). It’s a race of the parents against the disease, as if the child is a time bomb—but does that mean that the children are set for a destructive, immitigable explosion? Wright does not understand the implications and revelations inherent within his language; the verbal treatment of autism suggests deeper emotions than frustration or confusion: they suggest anger, misery, and contempt toward the disease—and, in some form, the child. Autism as a disease, however, both explains all these problems away and promises there is a solution.

So in some ways this inclusion with the existence of the term is sometimes exclusion, because pointing out their differences leads to the stipulation of inadequacy in the context of society. This does not mean that the Wrights don’t care for their grandson Christian. These feelings have justifiable roots. When they originally received Christian’s diagnosis, “they were horrified to discover that they didn't know what to do next” because there was no place to receive information about the disease (Jardine 2). When they learned about the disease’s prevalence (1 in 150 births), Wright and his wife “were even more enraged,” especially since Wright says that the same statistics with cancer “wouldn’t be allowed” (Jardine 2). But what exactly does he mean? It’s suggested in the article that Wright is talking about the lack of media attention and public information on these statistics, but the manner in which he does so suggests an illogical livid feeling, one that is more confused and vulnerable sounding than simple frustration. His grandson had changed into someone he did not know or understand.
Unfortunately, coupled with this ignorance is the assumption that their preferred mode of communication demonstrates an inferior intellect. Yet the concepts illustrated in Amanda’s carefully constructed video represent a bright and articulate individual. And in the description for her video, Amanda makes sure to note that this is not “a look-at-the-autie gawking freakshow.” In fact, to her the categorization of autism as a disease suggests that there is something intrinsically wrong with her. This label is sometimes unfortunately conferred on a variety of people out of convenience, without taking into account their individual circumstances. Amanda makes this distinction to prevent the development of the idea that the video is merely an opportunity to parade her differences as hallmark eccentricities attributed to autism. In fact, this idea of the stigmatized label is ever-present in society. Overweight people are similarly seen in a harsh light because it is assumed that their situation can be easily remedied—in fact, the main problem is that society feels they should change themselves. They persist on forcing people to believe this idea, so that they feel pressured to change themselves. They give reasons like health and self-control, but concentrate on the appearance aspect, implying that being a certain weight will make people happier.

However, when people with autism are given more time to voice their opinions, the debate becomes more multi-faceted and complex. In an article about the program “Autistic Strength, Purpose, and Independence for Education” in an experimental school in the Catskills, the program is said to be “rooted in a view of autism as an alternative form of brain wiring, with its own benefits and drawbacks, rather than a devastating disorder in need of curing” (Harmon 1). The school is all about autism advocacy, especially against a world that seems against it. They veer away from the idea that autism is “ a shell from which a normal child might one day emerge,” which suggests that there is only one very particular operational mode of being, and that all the variations from this norm should be corrected (Harmon 1). Instead they see it as “an integral part of their identities, much more like a skin than a shell” (Harmon 1). In fact, they believe that the “intensive behavioral therapy” parents prefer is essentially repressing their autistic children, sometimes to the point of forced self-inflicted psychological injury. They give the example of modifying the behavior of an autistic child who screams when inside a supermarket; even if they were trained away from this behavior, their possible pain from the fluorescent lights and proximity of surrounding strangers would not be. "Behaviors are so often attempts to communicate," says an autistic woman engaged in the advocacy discussions (Harmon 2). Such behaviors could instead be moderated after their actual communicative meanings were realized. “Other traits, like difficulty with eye contact, with grasping humor or with breaking from routines, might not require such huge corrective efforts on their part if people were simply more tolerant” (Harmon 2).
But many parents do not share this point of view, “arguing that their antagonists are showing a typical autistic lack of empathy by suggesting that they should not try to help their children” (Harmon 2). One mother says that she is adamant in removing the tics and quirks of her autistic son, like his stilted speech. She says, "I worry about when he gets into high school, somebody doesn't want to date him or be his friend…It's no fun being different” (Harmon 2). Obviously one wants to have children that can make meaningful relationships and be accepted as the beautiful person they are, but at what cost of their being? In fact, when an autistic boy first hears how children “suffer” from autism, he mediates the use of the word in his statement by saying, "They suffer because they're depressed from being left out and beat up all the time” (Harmon 1). Isn’t this just another illustration of our fear of the different? A “cure” in this case is basically just a re-alignment to the societal set of norms.

The attention Amanda’s video received also led to a visit from neurosurgeon Dr. Sanjay Gupta, the chief medical correspondent at CNN. Amanda’s intelligence and her diagnosis as a low-functioning autistic are in discordance with one another, leading him to re-evaluate the conventional connotations of the disorder. “She told me that because she doesn't communicate with conventional spoken word, she is written off, discarded” (Gupta 1). This is the main point that several autistic people and autistic advocacy people have been making, and one that Amanda realizes is true for several groups outside of autism as well. He continues, “As I sat with her in her apartment, I couldn't help but wonder how many more people like Amanda are out there, hidden, but reachable, if we just tried harder.”

However, it must be realized that there is a reason for this stigmatism. There are several people whose health is detrimentally affected by the fact that they are overweight. Similarly, there are autistic people for whom the disease, in no uncertain terms, is hurtful to themselves and others. In her article about a beleaguered couple with an autistic child named Tom, Carol Sarler notes that the lives of the parents are effectively ruined. “This, then, is their life sentence: to worry, every hour of every day, what will happen to Tom when they are gone” (Sarler 2). Neither can no longer work, they have given hope on having normal, happy lives, and their whole family dynamic and plans have been permanently damaged. Their autistic child Tom is “destructive and violent” to the point that he pulls his grandmother’s hair out, bawls over the sight of a flying bird, and basically “screams, bites, defecates and destroys everything within reach” (Sarler 3).

Maybe that’s why, unlike Baggs’s idea of her diagnosis of autism, many people are striving to find a cure for the disease and concentrate on teaching the autistic how to interact with people and use conventional ways to communicate with others. The reason for this could be twofold: first, parents want their kids to lead normal lives—“normal” being defined as the usual style of life that most people have when they follow the traditional forms of communication. It is what they are used to, what they understand, and what they feel will give their children the best quality of life. Second: it would be easier for other people and society to interact with them; in this way the conventional ways of communicating are like manners. Following a group of set rules comforts people, because they know what they or the other people are supposed to do next. Regrettably, this also has a detrimental effect on society as it breeds a lack of understanding and respect for those without the conventional language.

But when can one make the delineation between a harmful disease and a quirky condition? It’s called the Autism Spectrum for a reason. In the end, one must look at the individual situation of each case, and realize that what makes the difference is the quality of life for the individual. Tom’s mother notes, “We used to have a little autistic boy who was often happy. Now we have one who never is” (Sarler 3). Isn’t being happy one of the hallmarks of being a healthy person? Therefore, saying that one is socially diseased when in fact they are happy as they are isn’t fair to anybody. Annie Lubliner Lehmann understands this because of how she came to terms with her son’s autism. In the beginning, she says, “every exchange [between them and their son] would become a lesson, every experience a tutorial….When he turned away from such lessons, despite our most animated efforts, we tried everything else we could think of” (1). But eventually they realized that every scheme seemed to fail, so they “began taking cues from him” (Lehmann 2). “Until then, he had never been able to enjoy the sensory pleasures of his beloved food magazines without our subjecting him to a monologue about what he was looking at. Now he was finally free to enjoy things for their own sake” (Lehmann 3).

In the end, shouldn’t being healthy individuals be less about what one is in the context of societal concerns and more about who they are and what that personality While autism is still a very complicated, confusing variation from the norm, with fractious tension inherent in many aspects of its social configuration, we cannot force the people to conform. We can certainly try and do so, and wouldn’t it make things easier? Where everyone is satisfied with the same thing, and sees the world with the same perspective, and interacts in the same way? No—it wouldn’t, because that’s impossible. We have to learn to accept that there are many variations to people, ones that society does not always take into account. In this case, it should be less about changing the person and more about changing the system.

The author's comments:
Work Cited

Baggs, Amanda. In My Language. 14 Jan 2007. YouTube. 12 April 2009.

Gupta, Sanjay. "Behind the Veil of Autism." Paging Dr. Gupta Blog 20 Feb 2007 Web.4 May 2009. .

Harmon, Amy. "How About Not 'Curing' Us, Some Autistics Are Pleading." The New York Times (2004): 2. Print.

Iannelli, Vincent. "How Is Autism Diagnosed? Autism Basics." Pediatrics. 27 Feb 2005. Web.4 May 2009. .

Jardine, Cassandra. “Should We Want to Cure Autism?; Two American grandparents are raising the global profile of the condition starting with a controversial debate in London tonight.” The Daily Telegraph. 22 Oct 2008, FEATURES, p. 23.

Lehmann, Annie Lubliner. "A Roller Coaster to Acceptance of a Son's Autism." The New York Times (2009): 5. Print.

Miller, MD, Michael Craig. "Sad Brain, Happy Brain." Newsweek 13 Sep 2008 Web.7 Apr 2009. .

Sarler, Carol. “Why can't we face the truth? Having an autistic child wrecks your life…: As controversy rages over tests for autism, a provocative personal view.” Daily Mail (London) 1st ed.(2009): 49. Print.

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