Understanding Your Inner Voice Edgar

If you search for the definition of autism you can find that it “is a developmental disorder- typically diagnosed around age three years- that affects the brain functions, specifically those areas that control social behaviors and communications skills. The term autism is frequently used in the literature to describe all of the disorders on the ASD spectrum” (Scott, 2006). When I read those words, I was trying to find information that could help me connect with my six years old cousin Edgar.

The medical definition was enlightening, but it couldn’t give me a lot of information about how I could communicate with him. Edgar was born in 2007 in the United States, and at age 20 months he was diagnosed with autism. He is the only child of Mexican parents, and he doesn’t speak. Mimics and noises are his ways of communicating. His current environment is a mix of English at school and Spanish at home, covered with tons of love from his parents, therapists, teachers, and relatives. When I met Edgar, I have just moved to Seattle and started going to his therapies so I could become a familiar entity for him.

As part of one of the core courses of the Communication Leadership Program at the University of Washington: “Leadership Through Story and Communities,” I had to create and art statement and product. This assignment presented me the opportunity to create a piece that could help me connect with my cousin. I wanted to learn how he perceives things, the way he communicates, and the way he’s learning to communicate with the rest of the world (us). The aim of this piece was to inspire and promote the understanding of this condition and to be marvelous for little things.

The process of creating this piece included researching literature related to the matter. Knowledge about autism has consistently changed from being a psychiatric disorder to a genius status, passing by the concept of a mixed bag and uneven abilities. Leo Kanner, a physician at John’s Hopkins University and pioneer in child psychiatry, proposed the term “Autism” in a paper for the first time in 1943. Kanner considered autism a psychiatric syndrome and individuals with this condition were institutionalized (Grandin, T. & Panek, R., 2013). Donna Williams an autism consultant (2014), reflects on the history of autism and the conception of it during the 90’s: “The only reason we developed pride specifically in being autistic since the mid-1990s is that it became associated with genius. In reality, though people with autism do have a range of abilities and talents, the ‘genius’ thing applies to around 1-10% of folks diagnosed on the spectrum. The rest are a mixed bag and uneven abilities are usually the norm and part of the diagnosis.”

On the other hand, the insights of a thirteen-years-old autistic boy, present an in-depth roadmap about it. He says, “People with autism must survive in an outside world, where special needs is playground slang for retarded, where meltdowns and panic attacks are viewed as tantrums, where disabilities allowance claimants are assumed by many be welfare scroungers” (Higashida, N., 2013). From this point of view, Autism becomes then not a disability but a variation of human perspective and interaction: “I think that people with autism are born outside the regime of civilization. Autism has somehow arisen out of this. Although people with autism look like other people physically, we are in fact very different in many ways. We are more like travelers from the distant past. And if by our being here, we could help the people of the world to remember what truly matters for the Earth, that would give us quite a pleasure” (Higashida, N., 2013).

Following the idea of a mixed bag and uneven abilities as the norm and part of the diagnosis, how can I get inside the brain of a kid who is part of this group? My approach consisted in recording Edgar’s daily life to capture the nature of his routines, the relationship with his parents and the role of therapy so I could understand his inner voice. Recording Edgar was a unique experience because when he was aware of the camera he hid from it, but when something else caught his attention you could presence something marvelous.

I’ve been saying for a while that communication is my field because that’s the thing I need to learn the most, and that’s one of the reasons I wanted to pursue a master’s degree in this field. With each project of which I am part of, I keep learning new ways of communicating and finding out that (at least for me) it all comes down to something personal. So with this project, I wanted to connect with him, and he taught me so much in the process. The final piece became all the things I want to tell him, and that I hope he will listen to when he learns how to speak.

References:

–       Grandin, T. & Panek, R. (2013). The Meanings of Autism. The Autistic Brain: Thinking Across the Spectrum. New York: Houghton Mifflin Harcourt. pp. 206

–       Higashida, N. & Mitchell, D., (2013). The reason I jump: The inner voice of a thirteen-year-old boy with autism. New York: Random House, pp. 151.

–       Scott, J. B., (2006). Occupational Therapy’s Role With Autism. AOTA The American Occupational Therapy Association, pp. 2.

–       Williams, D. (2014) The Changing Landscape  of Autism Diagnosis. Donna Williams’ Blog. Available at: http://blog.donnawilliams.net/2014/01/20/the-changing-landscape-of-autism-diagnosis/

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