Sensory Integration and Autism

My Perspective



"NORMAL" SHOULD NEVER BE A GOAL

Like all families, my family has stories they like to tell about me...about how, as an infant, I never cried to seek attention and disliked being cuddled...about how I would spend hours playing with 2 clothes pins and only agree sometimes to play with my sisters, if they asked...about how, as a first-grader, I couldn't figure out why my teacher never called my name, and who this other girl was with a similiar name that was never there, until my parents explained that my teacher was mispronouncing my name. They accepted me for who I was...and I grew up thinking everyone saw me as "normal".

Back in those days, you were "normal" or "retarded", and I definitely wasn't retarded. Not knowing how to explain why the actions of others mystified and pained me, it became my deep, dark secret...knowing that I didn't "fit in". But I tried to. I over-compensated trying so hard. I gave up experiencing emotions, so I had the energy to keep trying.

Contracting encephalitis as a pre-teen gave me a much-needed "break" from having to try so hard, at least through my teen years. It didn't do much for my sensitivities, eye contact, or memory though. When I was dropped off, on my own to sink or swim, at college, I went back to over-compensating. For over 50 years I kept my silence and spent a great deal of energy trying to hide my differences...to "be" like everyone else.

Most would say that I was successful. I have a career as an occupational therapist, master's degree in assistive technology, and 30-plus-year marriage. I am only now exploring the emotions and sense of self that I had to give up to accomplish this. I am discovering just how much I have missed and do not know about living, because I spent so much of my life just trying to survive. My success did not mean I "recovered", nor was I "cured", from being the person that I was born to be. I only learned to compensate by "pretending" to be what I was not.

Discovering, and having it validated through diagnosis, that my "differences" could be explained as Asperger's Syndrome, was like finding the key that would allow me to escape the prison in which I had put myself. Despite the emergence of a mild sleep disorder, "tics", and obsessive/compulsive tendencies (which may be secondary to the encephalitis or just a part of my ASD), I am much happier now than I have ever been.

Shortly after my diagnosis, I wrote two poems. The first was Different on the Inside." It was an attempt to explain to my husband the differences I hid from him and the world for so long. I found it very difficult to write, not because I didn't know what to say, but because I had so much to say and wasn't sure how to say it in words that those who didn't experience life my way would understand. The second one was Changling." I wrote this for myself, as I was "coming out" and rediscovering the "self" I almost lost in my attempt to become what I thought others expected me to be. It flowed easily. A changling is, in folk lore, an elf infant, who is swapped for a human infant by the elves, and brought up as a human. It represents the conflict that I experienced as an alien in a world in which I could find little solace or sense of belonging, and the joy of discovering the world of autism as a place where I can feel free to be me, and be understood...and the strong desire to bring the two worlds together...as the person I am.

I have learned that trying to be "like everyone else" wasn't the way to understand people. Appreciating their differences, and how we can use each others strengths to support each other, makes a lot more sense. "Normal" is an illusion. It doesn't exist except in statistics. It certainly shouldn't be a goal in life.