What is Autism?
What is autism? It’s a long
list of behaviors, or is it more? A diagnosis of autism is made only by looking
at symptoms. Eye contact impairment, hand flapping or social delay only
describe my outside actions, not what is wrong in my brain. Which part of my
brain is the source of hand flapping? Why is my motor control erratic? Is my
lack of speaking a sign of retardation or is it something else? (It’s something
else I assure you). Is it a hint of what’s wrong that my hands aren’t
coordinated or write legibly? How about my calm, flat face? Is it a sign of an
empty shell or could it indicate a muscle/brain communication problem?
In a condition that is
diagnosed solely on behavior, it would be nice if experts asked these
questions, but mine never did. They looked at my outside deficits and concluded
that my inside was equally impaired. I was assumed to not understand language,
to not recognize my parents from a stranger, to not have a thought more
advanced than a toddler no matter my chronological age. It was supposed that my
brain could be molded in increments by drilling me in basic material like nouns
or people in my family’s names or by telling me to jump or sit or touch my nose
over and over. This was the educational model I grew up with. So, I am telling
my experts what I couldn’t tell them when I was stuck in my silent prison for
so many years; you were wrong. Worse, you were treating the wrong symptoms.
I didn’t need to be taught to
understand. I understood everything as well as any other kid so I didn’t need
flashcard pictures of trees for my brain to understand a tree. What I had was a
body that needed to learn how to listen to my brain’s commands. I got answers
wrong, not because I didn’t understand concepts, or was too retarded and
limited, but because my hand and my body didn’t obey my brain consistently. I
challenge those who study autism, and those who dictate our lives in school and
home programs and in speech therapy and in OT and on and on, to imagine that
the non-verbal autistic kid you see is not a mentally challenged person,
however retarded he may appear, but is a thinking, interesting, understanding
person whose body is a source of imprisonment. It is a new way of looking at the illness, but I tell you, hard as it may be to see it this way, it is
the true illness- not the observed symptoms.
My body is a source of
frustration. It doesn’t respond when it needs to. It does mindless stims
instead of purposeful action. It traps me in silence. It is a true puzzle. But
despite this, my thoughts are true and clear and I can think and think and
think. I believe that now that more and more non-verbal autistic people are learning
to communicate by pointing to letters and by typing that we need to determine
our own educational needs. It is time to end educations determined by experts
who see only our strange outsides and refuse to inquire about our normal
insides. It is time to force experts to open their eyes to a thing called the
truth. It’s time because the devastating illness called autism can’t be cured
as long as experts don’t see it in the accurate way.
I want a cure and I want
communication now for all those still trapped in silence. This is why I wrote
my book (to be published soon) and it is my dream that it may help my friends and so many other
autistic people and their families to be liberated too. In my essays I explain
autism from the inside out. I challenge widely accepted theories and beliefs
about autistic people and I explain where they are incorrect. I describe my
early education so people can learn how it felt to be on the receiving end of
this kind of instruction, and I will share my emergence into communication and
hope. This is my personal story, but I speak for many other autistic people
too.
Thank you for listening to a
silent boy no more.
