Autism: The Lived Experience
Autism is complicated. There is a wide spectrum, and it is odd to think of a child who is nonverbal and one who can read at the age of one as both having autism, but they can. Along with the expansive spectrum there are also different views of autism, as some people see it as a disease that must be cured while others see it as a form of neurological diversity that benefits society (The Autistic Self Advocacy Network). In the introduction to Jenny McCarthy's book, Louder Than Words, Dr. Jerry J. Kartzinel states, "Autism, as I see it, steals the soul from a child; then, if allowed, relentlessly sucks life's marrow out of the family members, one by one" (xvi). Although Dr. Kartzinel is a parent of a child with autism and a doctor with patients on the autism spectrum, his narrow and negative view of autism is harmful and has led him to advocate potentially dangerous "cures" for autism. Instead of working with the child, he works against his/her body with treatments such as chelation, which aims to extract mercury from the body. Children with autism can struggle socially, but they have so much to offer that Dr. Kartzinel neglects to see. By ignoring the unique capabilities of people on the autism spectrum, Dr. Kartzinel underestimates their talents and worth in society. In contrast, Daniel Tammet, Temple Grandin and John Elder Robison all have written about their lives as individuals with autism and show that through their unique ways of thinking, fixations, and rare talents, they have each accomplished quite a lot.
Having a child with autism can bring financial and emotional pressure to families. I have a cousin with autism who attends a special school that provides one-on-one attention, special camps during the summer, and has had several therapists, all of which cost money. My cousin had to be taught to sit still, listen, and ask for what he wants. As a teenager, he can't hold a long conversation, doesn't go to the movies or games with classmates, and is praised when he sits through a restaurant dinner. Although he is not like a "normal" teenager, it doesn't mean that his soul is somehow missing or that he is sucking the life out of his family members. He has other talents and other ways to reach out. Although he has never received piano or singing lessons, my cousin can play a song perfectly after hearing it only once and has perfect pitch. His love of roller coasters and organizational skills motivate him to plan family trips to theme parks, right down to the hotel room with the best view. We're proud of his talents.
The key to understanding autism is to understand that it does not affect people in the same ways. Another teenager with autism may have different fixations and talents than my cousin. The Autism Society of America defines autism as "a complex developmental disability that affects a person's ability to communicate and interact with others." Generally, children who have autism play alone, have fixations, need particular sensory stimulation, and have trouble understanding social norms. In his book, Look Me In The Eye, Robison describes the problems he has fitting in: "It's clear to me that regular people have conversational capabilities far beyond mine … small talk — or any kind of talk that goes beyond a simple exchange of information — has always been a challenge for me" (191). However, autism doesn't steal the soul from a child as Dr. Kartzinel argues, but instead reveals the soul in a different way.
Daniel Tammet has savant syndrome, and like most people with savant syndrome, he is also on the autistic spectrum (6). In his memoir, Born on a Blue Day, he compares some of his tendencies with those of character Raymond Babbitt, who was famously portrayed by Dustin Hoffman in Rain Man. Tammet describes that like Babbitt, he has an "almost obsessive need for order and routine which affects virtually every aspect of [his] life"(1). Also like Babbitt, Tammet has rare mathematical abilities. He sees numbers, which are more than mathematical symbols to him; for instance, David Letterman is the number 117, tall and lanky, 11 is friendly, and 5 is loud (2). Solving math problems comes easily to Tammet, and power multiplications are his favorite. Although he is a genius when it comes to math and numbers, like other individuals with autism, he is socially challenged. He had to learn empathy, as he explains: "Emotions can be hard for me to understand or know how to react to, so I often use numbers to help me. If a friend says they feel sad or depressed, I picture myself sitting in the dark hollowness of number 6 to help me experience the same sort of feeling and understand it" (7). Aside from numbers, Tammet has an incredible gift with foreign languages. Because of his difficulty in social situations, Tammet did not go to college but instead went to Lithuania to teach English as a volunteer. Although knowing Lithuanian was not necessary, Tammet began to study the language, and he notes that "within a few weeks I was able to converse comfortably with native speakers" (135). Now, Tammet has used his extraordinary talent with language to create a successful online foreign language tutorial business, and he is an example of how people with autism can use their unique capabilities to their advantage.
Temple Grandin, another individual on the autism spectrum, also has used her unique way of thinking to create a career. She has a visual mind, like Tammet's, but does not have an intimate relationship with numbers. Instead, Grandin, who designs livestock facilities, can visualize her engineering tasks. As she describes, "I am able to 'see' how all parts of the project will fit together and also see the potential problems. Sometimes a sequential thinker makes a mistake in designing because he can't see the whole" (Grandin and Scariano 142). Thus, her autistic mind is beneficial and gives her an advantage over her "normal" colleagues. Grandin's interest in cattle chutes sprang from a childhood fixation. As a teen Grandin made cattle chutes for her personal use because, for her, the pressure of the machine was a substitute for human touch. Grandin, like many other people on the autism spectrum, does not like to be touched by others. Her experience with cattle chutes gave her "empathy for the animals going through the facilities and helped [her] to design better equipment" (Grandin and Scariano 146). She has made cattle chutes more humane. Now Grandin is successful, as she describes: "I travel all over the United States, Europe, Canada and Australia designing livestock handling facilities for ranches, feedlots and meatpacking plants" (Grandin and Scariano 146). Her success is directly linked to her childhood fixations.
Grandin, like many people on the autism spectrum, now takes medicine to reduce her autistic tendencies; however, she notes, "[I]f medication had been prescribed for me in my early twenties, I might not have accomplished as much as I have. The 'nerves' and fixations were great motivators …" (Grandin and Scariano 145). Thus, if her parents had tried to "cure" her of autism as a child she would not be the huge success she is today. However, in an interview, she also stated "I would not be here now if I did not have anti-depressants" ("Interview"). Medicine can be a miracle and/or a risk. Autism is an expansive spectrum and medication may not affect two people with autism in the same ways. It is important when medicating a person with autism, says Grandin, to see "an obvious improvement in behavior in a short period of time" ("Interview"). When using medication the benefits must outweigh the risks, and the usefulness of medicine might change over time.
Asperger's syndrome is on the autism spectrum and is often characterized by exceptional intellectual capabilities and social difficulties. John Elder Robison has Asperger's Syndrome and describes his life in the memoir Look Me in the Eye. Robison's family life is shockingly dysfunctional, not because of his Asperger's, but because his father is an alcoholic and his mother is schizophrenic. Like many children with autism, Robison is exceptionally smart but unable to perform in school. Although he is a high school dropout, Robison has had a successful professional life because of his visual mind. He has designed complex audio systems for concerts, including the special effect guitars for KISS. He entered corporate America by making talking toys; however, he had trouble working with his colleagues: "I was not a team player. I had trouble communicating with people. I was inconsiderate. I was rude. I was smart and creative, yes, but I was a misfit" (205). Finally, Robison went into business by himself by opening an auto repair shop and fixing and selling cars. As he explains, being an auto repairman is the perfect job for him: "I found my niche where many of my Aspergian traits actually benefit me. My compulsion to know everything about cars made me a great service person" (214). He is a success because he has learned to live with Asperger's. Looking back on his life after being diagnosed with Asperger's, Robison writes, "So I am not defective. In fact, in recent years I have started to see that we Aspergians are better than normal! And now it seems as though scientists agree: Recent articles suggest that a touch of Asperger's is an essential part of much creative genius" (240). As Robison shows, autism is not the devil and it does not steal a child's soul, but instead can give great talent.
Tammet, Grandin, and Robison all used their autistic characteristics to their advantage instead of trying to "cure" them, and positive views of the autism spectrum led to successful careers. Still, not everyone with autism has talents that can be adapted easily into a job, and it is important to remember that everyone with and without autism has talents and weaknesses. Dr. Kartzinel focuses on the negative aspects of autism and misses the people with autism and their capabilities. Most importantly, Dr. Kartzinel's view of autism does not help people on the spectrum receive aid; it just contributes to public misunderstandings of autism. Autism can be difficult for families and people who have it, but it can also bring great gifts that should not be overlooked.
Kerry Margaret Bowen is sophomore at the University of Mary Washington. As an officer of the Ecology club, a volunteer coordinator, and a member of the International Living Center on campus, she keeps busy during the school year. In her free time, Kerry enjoys music, board games, books, and friends.
- "About Autism." The Autistic Self Advocacy Network . 2007. 17 July 2008 <http://www.autisticadvocacy.org>.
- Grandin, Temple, and Margaret M. Scariano. Emergence: Labeled Autistic. New York: Warner, 1986.
- "Interview with Dr. Temple Grandin." Autism Research Institute. 1996. 21 August 2008 <http://www.autism.com/families/older/temp_int.htm>.
- Kartzinel, Jerry J. Introduction. Louder Than Words by Jenny McCarthy. New York: Dutton, 2007.
- Robison, John Elder. Look Me in the Eye. New York: Crown, 2007.
- Tammet, Daniel. Born on a Blue Day. New York: Free Press, 2006.
University of Mary Washington
In Spring 2008 I taught a first-year seminar on Representations of Autism in Contemporary Literature and Film. The course engaged issues surrounding autism, and by extension, various disability issues such as autonomy, civil rights, difference, dignity, discrimination, education, family, health care, and the like. From day one, Kerry Bowen distinguished herself as an excellent writer and an indispensable contributor to our weekly meetings. Her short essay below was completed while Kerry was still a first-year student, and this is her response to the second assignment in the course, which invited a critical engagement with our readings and a detailed argumentative analysis of someone else's account of the lived experience of disability. This assignment grew from a unit on nonfiction narratives about autism, which included Temple Grandin's 1986 Emergence: Labeled Autistic, Barbara LaSalle's 2003 Finding Ben: A Mother's Journey through the Maze of Asperger's, John Elder Robison's 2007 Look Me in the Eye: My Life with Asperger's, and Jenny McCarthy's 2007 Louder than Words: A Mother's Journey in Healing Autism.
In response to the assignment, all but three students focused on autism, and there was a wide range of approaches. They included a personal essay relating a sibling's lived experience with autism and four arguments about the lived experience of autism in terms of one particular treatment option (the Defeat Autism Now!, or DAN!, Protocol), of the educational system, of the financial cost for families, and of the need for equal rights on a global scale. The rest featured critical arguments about one or more of the readings, though only one essay took the extra step of bringing in a text I had not assigned (Daniel Tammet's Born on a Blue Day), and this was Kerry's essay. In my own work on autism I privilege texts that represent it as human variation and difference (as opposed to texts that suggest it is a defect to be cured), but I had taken pains to present the two scripts as objectively as possible during class. As such, Kerry's essay is the result of her own decision to pursue a thesis that insisted upon respect for autism as human variation and difference.