Sunday, November 1, 2015

Living the Autistic Mythos

Ben Edwards "Living the Autistic Mythos" on The Autist Dharma




Having studied different cultures of the world academically for seven years, I have come to learn how all cultures shape their world view through mythos, or mythology.  I had gone to a local community college in my hometown of Kansas City for three years, and after that, I went to school at the University of Central Missouri in the small town of Warrensburg, Missouri, an hour’s drive away from my home, and there I declared and received my degree in Cultural Studies.  My current career ambition is writing-novels, poems, histories, philosophy, songs, etc.—but a series of taking several classes just out of pure interest followed by the sudden desire to graduate school with a bachelor’s degree in good time led to me picking a hasty, individualized major, but one that would enrich my world view all the same.  During that time, I came to learn about the idea of “mythos.”  Myths in this sense do not mean lies or misconceptions.  According to Ronald Wright, author ofStolen Continents, myths are “an arrangement of past events, whether real or imagined, in a pattern that resonates with the culture’s deepest values and aspirations…so fraught with meaning that we live and die by them.”  These “values and aspirations”—beyond religion, politics, and philosophy--are expressed by different cultures in things as taken for granted as every day conversation amongst people in each culture.  The more I learned about different cultures across the world, the more I began to think of the culture of my own country, and eventually, the culture of the autistic community, at home and abroad—a community and culture that I believe moreover share a common, albeit latent, world view, and the common stories they share reflect this and what it means to be an autistic person.
 
                I believe, as other autistic rights activists do, that autism is not something a person suffers from, as much as they suffer from a society that benefits people who learn, live, and process in one way that it does others; that autistic people are not a recent epidemic of vaccines, genetic mutations, mothers over thirty-five, or bacon, but have been around for hundreds, if not thousands of years, as an evolutionary divergent strand of humanity like dyslexics and people with AD/HD, OCD, etc.; and that society needs to change to accommodate our differences, instead of changing our differences to accommodate it.  I also realize that every time I see my fellow autistics out there, I share a special connection to them.  I believe these ideas mean something to all of the autistic and autism community, even if some do not know it yet.  I have met individuals and families taking part in the walks and Light It Up Blue events of the pro-cure organization Autism Speaks, even though they reject AS’s medical model of autism, while wishing to know that they and their families are not alone.  In time, I have learned it is my job to show these individuals and families my own way to understand they are not alone, through building connections, planting seeds, and gaining trust.   

These views on the autistic people are reflected in my writing, art, music, and have been for the last five years.  In the last seven years, I would undertake many great projects in the name of these ideas, such as leading and starting autistic student unions at these colleges, writing blogs, and speaking to and mentoring autistic youth at summer camps and learning disabled schools. During my lifetime, I have also heard about Autistic myths (both good and not so much)—autism and autistic life in films, among celebrities, historical individuals, across the world and throughout history, fighting for their rights, celebrating Autistic pride, going unnoticed in women and girls, existing in adults.  Films fromNapoleon Dynamite to Sherlock Holmes to Adam; individuals such as Dan Akroyd, Thomas Jefferson, and Albert Einstein; books such as Roy Richard Grinker’s Unstrange Minds: Unmapping the World of Autism and Steve Silberman’s Neurotribes: The Legacy of Autism and the Future of Neurodiversity; as well as issues of autistic adults from employment to relationships to dating; and events such as Autistic Pride Day, Autism Acceptance Day and Month, as well as Disability Day of Mourning.  While I certainly do no approve of everything about each “Autistic Myth” I see, I notice how these sociological and cultural aspects of autism have been a part of growing up and living for my fellow autistic rights activists, and I believe over time, these stories, these memes, these perceptions will develop to suit our current needs and ideas. 

When I think of the autistic community, I see we do in fact have our own deepest values and aspirations.  Now, while it is true that many autistics will adamantly argue for their autism to be “cured” and wish that they did not live with it, they do so because they have lived a life full of stigma and discrimination, which makes them blame themselves for their own struggles, reinforced by families, schools, and aggressive lobbying industries such as Autism Speaks.  Indeed, when people from any culture have been surrounded by people of another culture, they frequently become disconnected from their own identity, just as an American can do if they go to live abroad.  But, when I am surrounded by autistics in groups such as the local Autistic Self-Advocacy Network chapter in my area, I feel consistently like I belong, am comfortable, and can express ideas about myself and people like me, which is what it means to be a full member of a particular culture.  When I am around neurotypicals, particularly insensitive, domineering, and close-minded ones, I do not feel so comfortable being openly autistic like I do with ASAN.

                I have once heard a saying, “Other cultures are not failed versions of being you.  They are unique manifestations of the human spirit.”  For this reason, when I think of the Autistic culture, I think of autistics (the autistic community)—proud, self-respecting, and authentic people—and, by extension the people who care about them, such as (potentially) their family members, service providers, friends, spouses, and children, as opposed to groups making enormous profits, saying autism is like a tsunami, car wreck, lightning, or cancer, AIDS, and diabetes combined—groups like Autism Speaks.  Their message is simply crass and has no meaning to Autistic culture whatsoever.

                What seem to be common across the autistic/autism community are certain themes, which in fact all seem to make me believe in the idea of an autistic mythos.  These include themes such as autism in the media (movies, television, etc.), famous autistic people (Temple Grandin, Daryl Hannah, Andy Warhol), scholarship—learning about autism as a difference and how to better accommodate the needs of autistic individuals and families, and public events and recognition—whether events like World Autism Awareness Day and Light It Up Blue or, on a more positive note, Autistic Pride Day.  Seeing autism across different cultures, existing in historical figures, and being masked by behaviors, co-morbid conditions, and medications in women and girls demonstrate to me that our differences can blend in or stick out, depending on the culture and time we live in.  From looking at autistic characteristics showing up in film, television, fiction, and video game characters, I realize how my autism shapes the way I see and relate to people.  The famous autistic people of history and Silberman’s study of autistic individuals throughout time and space demonstrate that we are a timeless people, and not an epidemic, while contemporary notable autistic individuals make it clear that there are inspirational autistics today, and it is unnecessary to look at history to find them.  Autistic adults I have met over the course of my life time, struggling with school, relationships, and employment show me how absurd it is to simply wait around for a magic cure to our autistic realities, and need to get a hold of the situation while we have the chance, and thus making the need for any autism cure completely obsolete, as autistic rights activists have been saying for decades.  And while some events and public recognition of autism are more positive than some, I recognize that we autistics have the power to join together with the support of our friends, relatives, and supporters who make autistic existence what it is.  It is because of my life and education I have had on autism that I am willing to go to any lengths to help my autistic kin, and in that respect, I see what Wright means about how myths are something we live and die by.

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