As parents with an autistic child, we often get the question asked to us, “What is autism?” This is a hard question to answer. It is unlike answering something such as “what is an ear infection?” In an ear infection, we know the cause is bacteria invading the middle ear which causes an inflammatory response from our immune system, which causes fluid to build up behind the ear drum resulting in building pressure and ear pain. The treatment is antibiotics. Autism is much more complicated. We don’t know the exact cause or causes. There is a spectrum of appearance from the non-verbal to the quirky Asperger working in a university. There are probably 100 or more different therapies and treatments, with no universal standard of care. Even 8 years after Philip’s diagnosis of autism, I struggle to answer the question, “What is autism?”
Probably the most common way of explaining autism is through the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV ) which delineates criteria used in the medical field to diagnose autism. The three landmark symptoms in autism are 1) impaired social interaction, 2) impaired communication, and 3) restricted and repetitive stereotypical patterns of behavior (often called ‘stimming’ in autism circles). Missing from this definition is WHY these things occur. Also inherent in this definition is the idea that autistics “lack” something in comparison to those without autism.
I decided to ask Philip what his definition of autism was. Here is his answer: “IT IS TALKING WITH STENCILS.” How interesting it is to me that Philip did not give autism a negative connotation. It is simply a different way to communicate.
I wanted to explore this idea of communication in autism. I asked Philip, “Why do you have to talk with stencils?” Philip stated the obvious, “I CANNOT TALK.” I then asked why he could speak some words such as requests for food. “I CAN TALK TO RELIEVE SOME OF MY TOP DESIRES.” “Why is it hard for you to use your voice for conversation?” I asked. Philip answered, “I AM AUTISTIC. I CANNOT SIMPLY TALK. IT IS A TASK THAT IS IMPOSSIBLE. MY TONGUE WILL NOT OBEY MY BRAIN.” “Why can you spell then?” I asked. “MY FINGER CAN OBEY MY BRAIN WITH A LOT OF ATTENTION,” spelled Philip.
I then wanted to explore the common notion that autistics are in a world of their own. The word “autism” is derived from the Greek word “autos” and was first used by Swiss psychiatrist Eugen Bleuler, around 1911, to describe severe social withdrawal in childhood. I asked Philip, “Are people with autism in their own world?” “Y (for yes),” answered Philip. “Tell me about being in your own world,” I urged. “I HAVE TO BE IN MY OWN WORLD BECAUSE I CANNOT TALK.” “What does it feel like to be in your own world?” I asked. “IT FEELS A LOT LIKE I ALWAYS HAVE TO LISTEN AND ANYTHING I HAVE TO SAY IS IGNORED.” “What happens in your own world?” I asked. “I TALK TO MYSELF. I TALK TO GOD,” spelled Philip. “How did you try to communicate before stencils?” I asked. “A LOT OF TIMES I WOULD TRY TO TALK.” “What happened when you tried to talk?” “I AM ANSWERED WITH A NO. A LOT OF PEOPLE CANNOT UNDERSTAND. IT MADE ME FEEL SAD,” explained Philip. “How is it different now that you can communicate?” “I AM PART OF THE TOTAL STATE OF THE WORLD.” “How does that make you feel?” “I AM NOW MUCH EASIER TO UNDERSTAND. IT MAKES ME FEEL SO HAPPY.”
I have learned the most about autism from Philip. How can I define autism going forward? In Philip’s case, it is a different way of communicating made necessary by a neurology that makes it difficult for Philip to transmit his brain’s intent into outward action. The symptoms of autism found in the DSM are the effects of this disability in expressing the inner self. Make no mistake though, the heart of the autistic is the same as everyone else’s. He longs to be understood, to be connected to others and the greater world, and to be loved unconditionally. After all we are all human.
Philip and Kaylie (and Brooklyn) Oct. 2013