How I Lost the Burden of Shame
During National Autism Awareness Month, Autism NOW and The Arc offers the personal stories and perspectives of people with autism to generate discussion about autism awareness and acceptance. We invite your comments here and on Facebook and Twitter using the hashtag #AutismAware.
By Charli Devnet, Croton-on-Hudson, NY
I grew up in the l960’s and was cursed with the label of “gifted child.” I say cursed, rather than blessed, because, in my case, a high IQ only served to mask what I really was, an autistic child. Back in those days, the term “autistic” was used almost as a synonym for the derogatory term “retard,” and no one, not my parents or my neighbors, and not my teachers, could conceive that one who could read at the age of four and had advanced verbal skills could possibly be autistic. This lack of understanding persisted, despite the fact, that from the time I first entered school, I displayed many behaviors which were clearly signs of autism. I could not control my emotions. I did not work or play well with others. My motor skills coordination was poor. The other kids said “I walked like a swaying ship,” and I had difficulty learning to tie my shoelaces or balance on a two-wheeler. I was overly committed to routine and resistant to change. My parents would not take me to see the fireworks on the Fourth of July because the noise would cause me to become unhinged and I suffered from so many taste aversions that, to this days, I have a very limited diet.
Now, although the adults around me did not see my disability, my classmates did, with that unerring instinct children have for the one who is different. I was bullied and tormented, for reasons that I did not understand. When I asked my mother why I had been singled out for such treatment, she replied confidently that the other kids were jealous of me, I being so scholastically advanced, and that I should just ignore them. This advice never sat well with me, and, although I tried to follow it, I seethed inside. I lost respect for the adults who could not or would not protect me, and I misbehaved. And I learned that my best chance of unmolested survival would come if I cast down my eyes, ran away, and buried myself in a hole. It was all my fault, after all, in the absence of any other rational explanation. Why did my classmates taunt and harass me? Why could I not control my behaviors? Why did the teachers not understand me? Why was I not like the other kids? That was the puzzle that was to haunt me all my life.
I have numerous cousins, most slightly younger than myself. In my childhood, my mother would unwisely boast before her in-laws of her little “genius” and unfavorably compare their ordinary mediocre offspring to myself.. My mother lived to eat those words. Soon enough, there came a day when all my cousins were married, had children, jobs and homes of their own whereas the little “genius” was foundering about, unemployed or underemployed, with no social life to speak of outside of sporadically pursuing men who invariably ran away at her approach. “Why?” became the constant refrain. Why, despite several college degrees, could I not find a full time job? Why did I have no friends? Why was I frittering my life away rather than fulfilling my early promise? Was I just a loser in life’s lottery? No. There had to be an answer, and the only one that came to mind was that I was selfish, recalcitrant and lazy.. I had no friends and no career “because I did not want them.” I took my grievances and I turned them inward, flagellating myself as surely as any medieval penitent in his monk’s cell. Somehow, someway, if I had just tried a little harder, asked the right questions, found the proper key, I could have been “normal.”
My parents took their disappointment with me to their graves, but, ironically it was their loss that led to my redemption. Many of us on the spectrum will never marry or become financially independent and we will find ourselves living with our parents or parental substitutes well into midlife. It is the death of our parents and the change in lifestyle that it necessitates, that finally shocks us into action. In my case, I found myself so unable to function or carry out everyday tasks following my bereavement, that I frightened myself into seeking therapy at last. I had always known that I was different, but I had never known why. My diagnosis of Asperger’s Syndrome brought me the gift of self-knowledge and set me free from the feeling of despair and shame that had held me in its grip. For the first time since childhood, I regained a sense of self-pride.
Charli Devnet is the author of The Snow Queen’s Daughter, a memoir of late-diagnosed Asperger’s which was published by Bramble Books in 2013. She also contributed a chapter to Different. . . Not Less from Temple Grandin.