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Culture is shared patterns of human behavior. We are affected by the cultural norms of the way people think, dress, eat, work, and other aspects of basic human interactions. Cultures tend to vary widely in these respects, so that people find those individuals from other cultures to be unusual or inappropriate. In an anthropological sense, culture is passed on from one generation to the next. Since others in their culture have taught them, people tend to think and behave in certain ways. Technically autism is not culture but definition; autism affects the way individuals diagnosed with the disease eat, dress, and how they understand their world. It even affects how they communicate with the world around them. So in a sense, autism functions as a culture. It produces characteristics and predictable patterns of behavior in individuals with autism. So to work with and understand individuals with autism, we must understand their culture, and the strengths and deficits that are associated with it. We must think beyond autism as just being a neurological disorder. In this paper I will look at the growing culture of autism for a better understanding of why individuals with autism think and behave the way they do.
"Autism is defined as a pervasive developmental disorder that is characterized by abnormal emotional, social and linguistic development in a child". (Mosby, 2009, pg. 959). Symptoms of autism may include relating to people, objects and situations in ways that are viewed by society as abnormal or not appropriate. It can also be defined as a neurologically based developmental disorder characterized by a spectrum of severity (Ochs et. al., 2004, pg 148). The range of severity can be from profoundly retarded to highly gifted. There has been no one defined cause of autism but many theories as to what the cause may be. Many groups and foundations tend to focus on research for a medical cure for autism.
The current view is that children with autism frequently have difficulty interacting and sharing with others. An example of this may be when a child protoimperative points, that is to point to an object for instrumental purposes (Ochs et. al., 2004, pg 150). They are less likely to share interest in objects with others through declarative pointing or pointing for the sake of their shared interest alone. Often children with autism will focus on objects, movies or other things that are of interest to them. They also tend not to make eye contact when listening to or responding to others. Individuals with autism also desire highly structured environments and schedules. Simple changes in schedules can make it very difficult for them to function. They tend to express negative feelings, such as fear and anger, more often than feelings of joy and contentment (Ochs et. al., 2004, pg 151).
. They are less attentive to others' expressions and emotions. This does not mean that they are unable to form friendships. One ethnographic observation revealed that the high functioning individuals with autism had friends with who they met regularly with (Ochs et. al., 2004, pg 151).
There has been discussion as to what extent is autism a phenomenon of sociality or other theoretical pursuits in anthropology (Lawlor, 2010, pg. 168). Anthropologists are starting to reject the narrow confines of what constitutes human social functioning by showing the complex ways in which autistic children and adults participate and contribute to their societies (Grinker, 2010 Pg. 172). Anthropologists have also started to contextualize the public debates about the prevalence of autism and its etiology in historical and cultural processes (Grinker, 2010 Pg. 172). The common stereotype of an autistic individual is a male, nonverbal, retarded, unaffectionate, self-abusive individual who does not engage in any social interactions. However, this stereotype is starting to give way to a better understanding that autism is a range of different conditions, strengths and weaknesses. (Grinker, 2010 Pg. 173). For Example, many individuals diagnosed with autism participate in sports, clubs, are married and have children. One example is Dawn Prince-Hughes, an anthropologist and mother diagnosed with autism. She finds beauty in her social differences as well as in her struggles. She is able to describe herself in cognitive and social terms. She writes: "We are all strange and broken and beautiful in our own ways. We are each so afraid of disconnection and yet it can't be easily escaped; some say it is an inevitable state of being and, perhaps, the price of consciousness. That fact makes our connections to other living things all the more important to cultivate. There is beauty in our difference and also beauty in our sameness: sameness with other animals, sameness with one another. We feel the loss of so many things: falling forests, disappearing animals, the loss of each other as we move far and fast in our culture. I think back to our original ancestors. If they were, as I believe, like me in their way of being, their needs were simple after the eating and drinking: to be loved, to be appreciated for their special abilities, to want to leave something meaningful behind them. When I, and then my son, take in our last breaths, reversing our first loud inhale with a quiet exhale, when our naked bodies shake, slick with sweat in place of that first wetness when we came into the world, when we have been delivered through that tight, black hole that marks the end and signals the beginning, I hope we will be welcomed back to be a part of memory itself. The old ghosts will celebrate." (Prince, 2010, Pg. 67,68). While this may seem like a long quote, you can see in her writing, she shows the depth of her emotions and feelings. Her thoughts and feelings in the quote contradict the typical stereotype that people with autism are only able to express their negative feelings and emotions.
Sadly, many psychologists and others view autism as absences or deficits (Grinker, 2010 Pg. 173). Some researchers such as Vinden and Astington have written: "People with autism are in some senses individuals without a cultureâ€¦since culture is by its nature very dialogic" (Vinden et.al., 2000 pg. 516). I have had the honor and pleasure of meeting Temple Grandin, one of the most well-known individuals with autism, who has demonstrated her social versatility, not just with humans but also with animals. Olga Soloman, a professor of Anthropology, has done research on how children diagnosed with autism interacted with dogs. The study was able to see how dogs and humans feed on one another. The interactions with the dogs enhanced the child's ability to communicate. Another example is Heather Kuzmich, a young woman with autism, who competed on a popular television show "America's Next Top Model". Heather was one of the top four finalists in the competition. These individuals are not examples of stereotypical people with autism but individuals who are complex and have unique personalities.
The individuals I have mentioned, as well as many others, challenge how we view autistic people. They are active and productive participants in their communities and society. Many view people with autism from the medical stereotypical perspective. However, more and more we are finding out that autistic people are challenging the popular expectations about sociality and communication in autism (Grinker, 2010 Pg. 174). ETHOS: The Journal of the Society for Psychological Anthropology recently dedicated their March 2010 issue to autism. Many authors in the issue resisted accepting the narrow confines of what constitutes human social functioning (Grinker, 2010 Pg. 175). This has increased awareness for future research to help autistic children grow into adults who are important parts of society and their communities.
Richard Roy Grinker, the author of Unstrange Minds: Remapping the World of Autism, is an anthropologist whose daughter was diagnosed with autism in 1994. In his book, which I was completely absorbed in, he discusses not only his personal issues dealing with a child diagnosed with autism, but the controversial idea that there is no evidence for an autism epidemic as well. Instead, the high rates of prevalence and diagnosis today are evidence that scientists are finally counting cases correctly (Grinker, 2008). He discusses how this is not only a good thing for the U.S. but for the world, as there are many cultures that have only just begun to learn about autism. Grinker gives the examples of the" growth of child psychiatry, the decline of psychoanalysis, the internet, the rise of advocacy organizations, greater public sensitivity to children's educational issues, and changes in public policies that have together changed the way autism is being diagnosed and defined"(Grinker, 2008). "Public schools in the United States have only started using the category of autism during the 1991-1992 school year, and they are now reporting diagnosis of autism more often" (Grinker, 2008). This is helping to develop ways to help children with autism, and also directing parents to appropriate resources. Today, epidemiologists are now counting cases of autism better (Grinker, 2008). Today, the statistics on autism, 1 in 166, are the most accurate there has ever been (Grinker, 2008).
In his book, Mr. Grinker discusses his travels to other countries. In the countries he has traveled to, the situation for individuals with autism is still far different from the United States. Mr. Grinker has conducted fieldwork in India, South Africa, and South Korea, While in those countries; he studied how the cultures treated individuals with autism. In India, there are relatively few people that are diagnosed with autism. Most of the people who would fit the classification in the United States are considered in India to be mentally retarded or mad (Ginker, 2008). When Mr. Grinker visited a prominent pediatrician in Delhi, the doctor said, "I wouldn't know if an abnormal child in my office had autism or not. I would just know he was abnormal." (Ginker, 2008). In South Korea, Mr. Grinker found doctors will often give an autistic child a diagnosis of reactive attachment disorder, which is thought to occur when mothers fail to bond with their children (Ginker, 2008). He learned that families prefer it over autism as it does not imply the child has a permanent condition. Also, a disorder with possible genetic links, such as autism, stigmatizes the entire family. This makes it harder for the affected person's siblings to marry (Ginker, 2008). The value of a family's apartment can drop if a child receives an autism diagnosis, according to Mr. Grinker. In 2005, a movie called Marathon was shown in South Korea. This film gave many people in the country their first look at autism. The movie is based on a true story about the struggle of a young man who is autistic. The young man earns respect and independence through running long-distance. Mr. Grinker has been instrumental in increasing awareness and advocacy for individuals with autism all over the world.
Mr. Grinker chose the word "unstrange" for his book title because it captures the essence of what anthropologists do. They make the foreign less strange (Ginker, 2008). In the world today, the work of anthropologists and others are making the stigma of autism less strange. They are helping to show others that people with autism, no matter what country or ethnic background they come from, are not socially disconnected from society but they are unique individuals who are able to communicate and form relationships. I have only discussed a few examples of how autism is growing as a culture. However, it is my hope that with the increase of information and research about autism, social communities via the internet and other places, and personal interaction with individuals with autism, society will come to learn how wonderful and unique these individuals really are.