What it is like to have autism

For every individual it will be different, as it would if I had asked “what is it like to grow up in America ( or other parts of the world)”, or asking what it is/was like to be deaf, blind, “normal” ( whatever that is!) . Our own perceptions and thoughts of every experience will be different from any other persons.

I grew up in a time when behavior was tied to morality and /or to inner strength of character.. You were good or bad and it was intentional it was assumed that you lacked strength or lacked moral fiber if you stepped out of what society expected for you. You were of strong character, or you were weak, with all the implications of those things spelled out very clearly. A line was drawn. In the 1950’s and early 1960’s of my early childhood, roles were clearly defined.

The later 1960’s changed everything, and those rigidly interpreted codes became confused and the lines became blurred. Of course this is simplistic, and I know that there were many in generations before me who refused to “play society’s game” but as a child I was not able to see this. I tried very hard to please those who were the rule makers and enforcers, and struggled mightily with understanding what those rules were. I was constantly in fear of those who had power over me because of punishments I was constantly receiving without actually understanding what I had done to deserve them.

My mother told me once in amusement that I would quickly sit on my hands or hide them behind my back when she came toward me suddenly… (she hit me for touching things she did not want me to touch) This was before I had words, as a baby. I still put my hands in my pockets, pull them into my sleeves or hold them in back of me or sometimes in front, and always cover them while i go to sleep.

I went to school, and it was much the same… confused and afraid, breaking rules I had no idea were rules, not understanding what was expected of me, not knowing things that average kids were able to understand intuitively.

My sister immediately second to my birth ( I am oldest) astounded me when she would comment on things she perceived about my mother, father, and their relationships with each other and with the other 2 youngest siblings. I could see the truth in her comments, but would never have noticed the things she spoke of if she had not pointed them out.

This happened all of my life, and I was often used as a scapegoat or a target of bullying, at home, at school, at work….set up and mocked because of my taking things literally, not understanding ( interpreted as willful disobedience) simple trust in promises made, etc. affected absolutely every small corner of my life. I am still unraveling incidents of the past by looking at how autism perceptions/ non perceptions may have colored my behavior and other people’s subsequent reactions… It is so painful , but it is at least now comprehensible, at least I know now it was not my fault, any more than it was theirs for misunderstanding me and how to ‘reach’ me… none of us knew!

Understanding my autism has helped in healing my constant and deep emotional pain and allowed me to forgive those of whom I was afraid, hurt by, and those I hurt unknowingly and unintentionally. I can let go of the past, file the whole sordid and painful thing, and start from a new standpoint, a point of view colored with understanding of my autism. ( and my mother’s, but that is for another day) It is like the difference between life as nearsighted and having new glasses, or like living with deafness and suddenly being able to hear. Everything is new, everything is finally able to be deciphered and understood. Thank goodness for understanding at last, after 66 years of struggle, sorrow, fear, anxiety, pain and misery. The relief has been tremendous!

My overwhelming memories of my childhood are of anger being directed at me, punishment frequently involved, and constant fear of that punishment and feeling absolute absence of love, never understanding why.

” Why?” might be the life- long mantra of many autistic folk. When I discovered my autism, I discovered the answers to so many “why”s of my early life. Why others were always angry and frustrated at me, why they did not like me, why I became a target of bullying, on and on and on. Autism answered almost all of it!

It has been such a relief to look at those days and see how my autism answers that question. Why? Autism!