Scientific and Public Discourse Analysis: What Does Autism Mean?
By Lily Longwell
Writing 111: Writing Seminar
The world needs all kinds of minds. My 17-year-old sister, Dorothy, is autistic. Does the world need Dorothy? She is reluctant to engage with others, preferring to assemble complex Lego machines and intricate friendship bracelets while entertaining herself in the safety of her secluded room. If we go out to eat, her fingers fidget with her coat zipper, and she squirms in her chair in anticipation of having to interact with the server. Better a puzzle than a face. But there is another side. Her inquisitive mind reminds me of those of the famous detectives of literature – seeing connections, noticing details, unraveling mysteries. Until she finds an answer, her focus is absolute. Her eyes stare, her mouth twitches, and her forehead seems to swell with activity. She can enter a trancelike state, recalling and organizing minute details. The result is amazing – a unique perspective the rest of us can’t see. Dorothy’s mind can make people uncomfortable. Yet isn’t she just a modern version of an ancient story – new perspectives and fresh ideas viewed with skepticism, even hostility, by conventional thought? Dorothy, and other countless minds like hers, may just have unique views that will help solve the world’s intricate challenges. In my internal world, Dorothy has taught me about patience and acceptance. In the outside world, Dorothy has taught me the importance of openness, not only to different points of view, but also to entirely different ways of thinking. With society’s acceptance, autistic minds could help solve the world’s mysteries.
The fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, commonly referred to as the DSM-5, characterizes autism spectrum disorder (hereafter referred to as ASD) by early developed social and communicative deficits, repetitive or obtrusive behavior, thoughts, or interests impairing occupational, social, and other areas of functioning involved in day-to-day routine (“DSM-5 Criteria”). With no tangible symptoms or tests associated with the disorder, doctors must base diagnosis solely on their observation of symptoms, behavior, and development. Over time, autism evolved into a spectrum disorder, including a broad range of conditions and levels of functioning. Such variability under one label has led society to easily form generalizations of all children in the ASD community. These stigmas lead to isolation from society, and restrictions on the ability of children with ASD to integrate into society. Varying perspectives within scientific discourse and public discourse illuminate different cultural meanings of ASD, leading to either increased marginalization or advocacy for societal inclusion. Those with ASD desire to be recognized for their unique qualities accompanying certain symptoms of ASD, as well as to be relieved of the misconceptions and limits of opportunity of the autistic community. While the scientific community aims to solidify a set of symptoms to properly diagnose ASD, consistently striving toward a cure to prevent its development at early ages, many public advocacy groups, parents, and autistic people themselves challenge these goals. Public and social communities, such as parents, advocacy groups, and people with autism promote inclusion and civil rights and services for the autistic to reach their full potential as they are.
Science has, at times, advanced understanding of ASD and consequently has bettered the lives of those in the ASD community. Despite some benefits to these scientific studies, overall there is a lack of attention to the wellbeing of the ASD community within this discourse. Scientific presentation of information unintentionally objectifies the autistic with language that defines them by their disorder exemplified by studies on possible maternal risk factors such as smoking, alcohol, and air pollution leading to the development of ASD (Lyall). These scientific studies, while factual and objective, present information according to a formalized scientific expression of data, in which scientists privilege a replicable procedure and data over opinion, personal reflection or anecdote. Kristen Lyall, a scientist in the Department of Public Health Sciences and the MIND (Medical Investigations of Neurodevelopment) Institute at the University of California, Davis, explores the possible evidence of non-genetic factors influencing neurodevelopment. Lyall’s article displays scientific results of studies on 50 ASD cases examining certain environmental and maternal lifestyle factors for associations with ASD (Lyall). The rigid structure of a scientific report rhetorically directs findings toward the scientific community to enable further research advancements. This genre of discourse serves purposes for groups of scientists, rather than serving as an easily understandable resource by non-scientists. Within this formalized language, scientists become accustomed to dehumanizing their subjects for experimentation to more directly foreground the methods and results of their studies. Lyall elaborately displays scientific results of brain pathology of developing autistic brains throughout pregnancy, investigating the critical periods for susceptibility (Lyall). In numerous tables, Lyall’s study displays scientific summaries of environmental chemicals and maternal lifestyle factors associated with ASD (Lyall). The study highlights potentially modifiable factors as they “offer an opportunity for altering behaviors at an individual level or taking action at the societal level in order to change exposure and thereby improve public health through reduced incidence of ASD” (Lyall 2). The study directs its goal toward reducing the ASD community by preventing its initial development which promotes ASD as a contamination of society’s “health.” However, for those living with ASD, it is their lifestyle and part of their identity, rather than a disease to be cured. By foregrounding scientific goals and outcomes, many studies, especially those related to disorders with social controversy such as ASD, often marginalize and dehumanize the studied communities. While the science in itself has no malicious intentions, the language used by scientists to convey the information can come across as robotizing.
Furthermore, research scientists of ASD at the Center for Disease Control and Prevention (CDC), overlooking the personal and emotional attributes of the disorder, focus their studies on determining causes and finding a cure. One study compares birth times associated with developmentally delayed (DD) and ASD cases (Schieve). CDC’s analysis of the study declares that the findings can help healthcare providers advise their patients on “ideal timing between pregnancies” to avoid the development of ASD (“Keyfindings”). This statement indirectly acknowledges pregnancies resulting in a child with ASD as less than ideal, conveying the priority of researchers to find a cure, rather than integrate people with ASD as others into society. Scientific discourse presents autistic brains as abnormal and seeks to find a way to alter them to fit society’s rigid parameters of normality, rather than encouraging society to accept them as they are.
Scientific studies and innovations, through objectifying and dehumanizing language, also emphasize their goals to benefit researchers’ quests for a cure over the wellbeing of the children and their place in their communities. CDC published an article on the use of diagnostic instruments for ASD. The article begins by introducing the goals of researchers to narrow the spectrum of diagnosis for ASD through seeking a “uniform way to define behaviors” (“Keyfindings”). Research scientists at the CDC suggest that the purpose of their study is towards creating standardized diagnostic procedures “that can be used to create well-defined groups of children to help guide treatment decisions or research designs” (“Keyfindings”). The article focuses on persistent research of standardized tools to facilitate the diagnostic process for doctors by “group[ing]” children into subcategories, suggesting further isolation from the rest of society. The summary of studies includes the purpose of these diagnostic advancements: to help “classify children with ASD, particularly in studies looking into causes of the disorder” (“Keyfindings”). This statement, bolded, suggests the importance of these findings to researchers and further studies. The studies exclude any reference to autistic children’s well-being or proper integration into society, but rather the dehumanizing language focuses on “classifying” children into “well-defined” subgroups to help enable doctors diagnose and advance research on causes and a cure. The findings suggest their desire to further classify autistic children to ease diagnosis, consequently defining them by their symptoms. Due to a sole focus on advancing scientific research, the language used by scientists and researchers results in a loss of individuality for children in the ASD community.
Parents may offer a distinct perspective to the scientific community as their first-hand experience with an autistic child provides insight to the mind and the day-to-day challenges, but also strengths, of each autistic child. This parental perspective humanizes the individual apart from their label. Carrie Cariello, a mother of a young autistic child, Jack, and author of the book, What Color is Monday? How Autism Changed One Family for the Better, writes a personal story with poetic appeal and positivity. Throughout her story, she describes how autism has shaped her child, her family, and her everyday life, using “I” to characterize autism. The beginning of her story immediately challenges the scientific generalization of ASD as she writes from the perspective of autism, “I am considered a human condition, but really I am a collection of symptoms” (“Real Stories from People Living with Autism Spectrum Disorder”). This statement suggests that while the scientific community seeks to define ASD as a set group of symptoms, Carrie ,along with other parents, recognizes her child’s individuality, asserting the variability of symptoms for each case within the autistic community. She exemplifies how every individual diagnosed has different tendencies that characterize their ASD. For example, while “some people jump and flap,” “others chew gum or run for miles or twirl their hair” (“Real Stories from People Living with Autism Spectrum Disorder”). Often, the disorder is generalized and stereotyped by the medical community, but parents and patients witness the other side of the disorder, each with a distinct personal story.
Through her personal story, Carrie offers a more nuanced understanding of ASD, beyond its scientific definition and features. This narrative perspective asserts it as a subjective diagnosis and not a defining limitation to one’s character. Carrie highlights how differences between an autistic and “normal” brain aren’t always negative or considered challenges. Rather, many differences can actually be beneficial, such as her example of Mozart, who, according to one theory, “because of [autism], wrote long, complicated symphonies” as “his hearing was rumored to be so sensitive, he could tell the difference in the slightest tone” (“Real Stories from People Living with Autism Spectrum Disorder”). Mozart’s sensitive hearing, a symptom of his possible ASD, led him to discover his special talents and achieve musical fame. Carrie’s reference to Mozart, along with other famous historical figures with ASD symptoms, encourages readers to understand the positive aspects of living with ASD, and comfortably reassures people with ASD that they are not alone. She directs a plea toward the public and medical community with fixed mindsets to recognize the “goodness” and “value” of all autistic individuals, accept their differences, and empathize with their sensitive feelings, rather than “rac[ing]” for a cure, searching for answers, and making quick judgments (“Real Stories from People Living with Autism Spectrum Disorder”).
Carrie uses the rhetorical strategy of emotional appeal through her sharing of her son’s personal examples to provoke understanding for those with ASD.Carrie notes that Jack “spends a lot of his day anxious and confused,” autism causing “his enigma [to be] wrapped up in Waffle Thursday and Pancake Saturday” (“Real Stories from People Living with Autism Spectrum Disorder”). She includes an italicized example of how her son would repeat “waffles waffles waffles,” his mind engulfed by an uncontrollable obsession and anxiety. This example allows the reader to recognize how many children with ASD struggle or obsess over minor details, which makes living with the disorder more difficult. Therefore, in sharing these stories, Carrie introduces the need for consistent support and acceptance in society for children with ASD, especially since they already struggle with many aspects of life apart from their marginalization. She touches on the “facade of normal” that has been constructed over time that increasingly foregrounds the expectation of all in society to act “normal,” in turn further isolating the autistic community. She concludes with the remark again from the perspective of autism, “If you let me, I will make the world better” (“Real Stories from People Living with Autism Spectrum Disorder”). The structure and subject of the statement places pressure on society to bend its rigid standards of normalcy to begin accepting people with ASD for who they are. She highlights a sense of motivation for the autistic community to “make the world better” with their unique outlooks on the world and special differences (“Real Stories from People Living with Autism Spectrum Disorder”). Rather than treating autism as a separate entity needed to be cured in order for the individual to prosper, parents like Carrie, witnessing every strength and weakness of their autistic child, assert the need for their inclusion in society.
In addition to these parents, advocates for the autistic community strive to value each autistic individual and progress toward political and social inclusion in society through public action and publicity in the media. Public advocacy groups, such as Autism Society, “advocate for policies that enable individuals living with ASD to reach their maximum potential and achieve the highest quality of life” (“Our Mission”). Autism Society’s “Take Action” page asserts a progressive approach on the lives of those with ASD to integrate them into society with social and political opportunities, rather than promoting the regressive medical search for a cure. The group encourages the need to help better the lives of people coping with the challenges of ASD in present society and reduce discrimination. Autism Society lists suggested actions the government needs to take to help with integration of those with ASD into society. It also encourages the public to engage in political activism and to advocate for government representatives, such as the Congress, to defend the autistic community. These acts revolve around the lack of integration of people with ASD into society, the majority fighting for work opportunities, education and healthcare equality, and access to services and resources for the disability community (“Our Mission”). Autism Society goes beyond solely stating what they believe, but also encourages the public to make affirmative change.
Similarly, another advocacy group, Autism Speaks, aims to make a more “inclusive world for the 70 million people with autism” through their creation of World Autism Month efforts (Autism Speaks, “Autism Speaks Aims to Create a More Inclusive World”). Autism Speaks established April as the Autism Awareness Month, encouraging everyone, worldwide, to Light it Up Blue, symbolizing their pledge to “increase understanding and acceptance of people with autism” (“Autism Speaks Aims to Create a More Inclusive World”). Autism Speaks emphasizes the importance of having conversations on how to make the world more inclusive for the autistic community. The first step is to create awareness of the marginalization of those with ASD. The Autism Awareness Month promotes this goal by encouraging people to wear blue, light up buildings blue, share photos and videos, and donate and fundraise (“Autism Speaks Aims to Create a More Inclusive World”). Autism Speaks even created a hashtag, #LightitUpBlue, allowing social media to more rapidly disperse their message and cause. Additionally, similar to the mission of Autism Society, Autism Speaks aims to “promote solutions, across the spectrum and throughout the lifespan, for the needs of individuals with ASD and their families,” focusing on how to improve their life through societal changes, not how individuals can be fixed to fit within the walls of society. Both Autism Society and Autism Speaks take and encourage action to promote the inclusion of people with ASD into society, in order to spark positivity and support, while reducing consistent discrimination.
Not only do outsiders advocate for the rights of people with ASD, but autistic people themselves recognize their discrimination and defend ASD as a part of their identity that society must adapt to and accept. Strong-voiced activist, Jim Sinclair, started Autism Network International, an autistic-run self-help and advocacy page for those with ASD. He forms a community that provides an outlet for emotions, including feelings of betrayal from society, felt by those with ASD. In his article, “Don’t Mourn for Us,” Sinclair argues against a particular parental perspective, one that grieves over the “tragedy” of learning their child is autistic due to unmet expectations of having a “normal” child (Sinclair). Sinclair asserts that parents must remove themselves from grief over what they don’t have and focus on the child they were given, especially since autistic children need support and can develop strong relationships with their parents like other children. Sinclair’s article provides interesting insight into an autistic person’s perspective that from the outside, ASD is a burden, but to people with the diagnosis, it is a “way of being,” that needs to be accepted and understood by society (Sinclair). Sinclair connotes ASD as inseparably part of his identity, indicating that a demeaning comment towards any aspect of autism reflects on him personally.
Sinclair’s sometimes confrontational tone and hyperbolic statements throughout the article reflect his frustration with the public as well as his desire to promote change in the attitude toward ASD and their treatment. He writes, “This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces” (Sinclair). His forceful and aggressive statements evoke fear in the readers as well as a desire to develop a better understand the impact of these words. In this passage, he identifies his opposition to both grief over an autistic diagnosis and the medical search for a cure, as they both promote a desire to terminate ASD and suggest the autistic mind to be useless. Sinclair ends his powerful article with a reassurance that those with ASD are “alive” and “real,” just as any other human (Sinclair). With his promotion of inclusion, he asserts advocacy and activism in defense of the autistic community. He directs his words to society, desperately exclaiming, “We need you. We need your help and your understanding. Your world is not very open to us, and we won’t make it without your strong support” (Sinclair). This demonstrates society’s need to conform to them with acceptance and inclusion, so that they can participate as active citizens. Jim Sinclair’s demanding, but sincere words strategically impact a reader, hopefully stimulating action, sensitivity, or a better understanding of the first-hand perspective of a member of the autistic community.
Both scientific and public discourse work together to define ASD in society. The scientific supremacy of the search for a cure and treatment, suggesting a regressive approach to the disorder, and the progressive approach offered by advocacy groups, patients, and families desperately seeking inclusion in society, provide countering perspectives on how to advance the understanding of ASD as a whole. Medical texts often utilize dehumanizing language, focusing on scientific and research advancements. By contrast, personal narratives and the goals of public advocacy groups portray the emotions experienced by the individuals and the social standpoint of autistic people in society. The medical perspective searches for a cure to prevent the development of ASD as well as a way to ease the diagnostic process to treat those with early developed ASD; both carry the goal to avoid abnormality in society. Public advocacy groups assert the need for societal reform to accept people with ASD into social and political communities. Without whispering in someone’s ear that my sister, Dorothy, has autism, she is treated just as everyone else. Why does the label carry so much weight among various discourse communities? Dorothy, and others with ASD, mustn’t need to hide their special minds to fit in, rather society must adjust to accept and fit them into society as they are.
Works Cited
“Autism Speaks Aims to Create a More Inclusive World for the 70 Million People with Autism through New World Autism Month Efforts.” Autism Speaks, https://www.autismspeaks.org/press-release/autism-speaks-aims-create-more-inclusive-world-70-million-people-autism-through-new. Accessed 10 Apr. 2019.
“DSM-5 Criteria.” Autism Speaks, https://www.autismspeaks.org/dsm-5-criteria. Accessed 14 Apr. 2019.
“Keyfindings: Using Diagnostic Intruments | Autism Spectrum Disorder.” Centers for Disease Control and Prevention, 27 Oct. 2014, https://www.cdc.gov/ncbddd/autism/features/keyfinding-diagnostic.html.
Lyall, Kristen, et al. “Maternal Lifestyle and Environmental Risk Factors for Autism Spectrum Disorders.” International Journal of Epidemiology, vol. 43, no. 2, Apr. 2014, pp. 443–64. academic.oup.com, doi:10.1093/ije/dyt282.
“Our Mission.” Autism Society of NC, https://www.autismsociety-nc.org/our-mission/. Accessed 10 Apr. 2019.
“Real Stories from People Living with Autism Spectrum Disorder | CDC.” Centers for Disease Control and Prevention, 29 Dec. 2015, https://www.cdc.gov/ncbddd/autism/stories.html.
Schieve, Laura A., et al. “Autism Spectrum Disorder and Birth Spacing: Findings from the Study to Explore Early Development (SEED).” Autism Research: Official Journal of the International Society for Autism Research, vol. 11, no. 1, Jan. 2018, pp. 81–94. PubMed, doi:10.1002/aur.1887.
Sinclair, Jim. “Don’t Mourn for Us”. https://www.autreat.com/dont_mourn.html. Accessed 10 Apr. 2019.
A Word from Lily
My semester of Writing 111 was about learning how to write rhetorically. I was wary of this unfamiliar new layer of analysis that differed from the traditional argumentative essays of my prior writing experience. I learned that rhetorical analysis is more about encouraging readers to think and develop their own opinions rather than persuading them. For me, this different writing process presented challenges. Because I was accustomed to formulating arguments and defending them throughout my writing, I often found myself instinctively analyzing the various discourses with a more argumentative, subjective tone. It was difficult for me to focus on the goals of the various rhetorical communities I was analyzing rather than rooting my analysis in personal opinions. Throughout the process, I learned how to intertwine pieces of my personal experience and opinions into a broader analysis of scientific and public discourse. I soon realized that I also needed to conceal certain opinions to avoid judgment or generalizations and to inspire diverse takeaways. It was hard to remain objective when I was writing about a topic relating so closely to my subjective experience.
My personal investment in the subject matter of autism made “Scientific and Public Discourse Analysis: What Does Autism Mean?” much easier to write and much harder to cut down. With the opinions in my family paralleling the ideas within the public discourse I selected, it was difficult for me to remain completely unbiased. Because I knew I should balance objectivity with my personal bias, I labored to be concise. This struggle presented my battle with concision. I tend to expand on my ideas in intricate detail and elaborate on topics that I am passionate about with the fear of leaving something out. While this tendency can be effective and powerful to an extent, it often led my paper astray from focus or clarity. I discovered that one of the most important parts of a research paper of this length is ensuring that every sentence is influential in furthering what I am trying to achieve. During my revision process, Dr. Branch guided me with various techniques for concision, as well as appropriate strategies for formulating a powerful rhetorical analysis. It is challenging to analyze the discourse surrounding autism, as it is already such a heavily controversial subject in our communities. However, my experience and passion for the topic fueled my desire to write, despite its difficulty. I am eternally grateful that my sister, Dorothy, has opened my eyes to a new worldly perspective. I hope to evoke this perspective and awareness of autism through my writing.
From Professor Erin Branch
Assignment
All semester, we have considered how the way we talk and write about our health and illness experiences shapes both our understanding of that experience as well as the care we receive from medical professionals. While it’s trite to say that medicine is as much art as it is science, we have seen that in action: doctors have to make decisions using a combination of empirical knowledge and intuition or instinct; patients have to report how they feel often in the absence of empirical information and they have to learn or intuit the appropriate language and gestures to accompany their report. As we have said, reporting that you are under the influence of Saturn is unlikely to lead to a diagnosis of depression; saying you feel sad and disengaged from your life is.
For this final project, you will explore a health or illness topic of your choosing. It can be a specific disease, like rickets or Down Syndrome or schizophrenia or diabetes; you can also choose a disease remedy or other health-promotion tool, like targeted gene therapy or an antibiotic or a very specific lifestyle choice (such as a low FODMAP diet). I would not recommend you choose a broad or generic topic, like “exercise” or “stress reduction.”
Your exploration may (should) take you in a lot of directions. You should explore your topic from a range of discursive and disciplinary and rhetorical perspectives to get a sense not so much of what your topic is, but what it means. For example, if you chose something like breast cancer, you might explore scientific and medical information about what is happening in the body when someone develops breast cancer, but you could also explore cultural meanings of breast cancer. Think of all the public awareness campaigns (pink ribbons), fundraising efforts (the Susan G. Komen foundation, the Avon walk…), and the role of public figures who’ve developed breast cancer or advocated on behalf of breast cancer victims. It has been normal in your lifetimes, but any sort of “female cancer” was absolutely taboo, even 30 years ago, so think about how breast cancer awareness-raising efforts have changed public discourse around women’s health. Whatever you topic you choose, you’ll need to identify some relevant discourse communities (remember that term?) and see how they talk and write about your topic. To start, your job is to read (and, possibly, watch and listen–to podcasts, news stories, videos, documentaries, etc.) widely.
Your final project will be a 6-8 page researched essay that tries to answer the question, What does my topic mean in our cultural moment? Your paper will include information from a variety of sources and thus allow you to consider questions like, what counts as evidence in different disciplines? How do people working in these different communities use language, argument, genre differently? Considering these questions, and writing through them, will help you come to an understanding of what your illness/health topic means across a wide variety of discursive and rhetorical contexts.
Professor Commentary
Lily’s essay was her final writing assignments in a Writing 111 course titled the Languages of Health and Illness. In this class, students read a wide range of texts related to medical encounters–from patient and doctor narratives to public-facing health information (like websites and advertisements) to scholarly articles investigating the rhetorics of disease, health, patient advocacy, and other topics. We attend to the ways that the language of scientific medicine, which tends to emphasize the empirical and the generalizable, can be at odds with most people’s individual, even idiosyncratic experience of illness.
Lily’s essay offers a perfect case study, since autism spectrum disorders remain such a conundrum for medical professionals, families of those affected, and of course those who are “on the spectrum”–a term which is itself a rhetorically interesting formulation. In the effort to identify a cause or vector for autism spectrum disorders, where do the living breathing patients figure in?
This is where Lily’s essay makes its most successful intervention. She draws readers in with a highly personal anecdote about her sister, and asks a provocative question: does the world need Dorothy’s mind? That question reminds us of the most basic tenet of disability studies and advocacy, which is that it is the world’s job to accommodate person with a disability. It is not the job of person with a disability to conform to the world. From there, Lily explores a range of sources and rhetorics of autism to show both benefits and limitations of standard medical discourse. Throughout, readers can sense Lily’s strong investment in this topic and in making subtle but profound arguments on behalf of her sister and others like her.