Sunday, April 10, 2011

Genius within: emerging from Autism - Story #1

Sitting before me is a three and one-half year old boy who has just spoken his first word, "O.K." This is unusual for a first word - most children start with names of important people in their lives, like "mama" or "dada" or even objects like "baba" for bottle. But Adam will start talking differently - he has been diagnosed as "autistic". After being silent for over three years, about three months of speech therapy has opened his world to the power of words. But not just words, he has begun to appreciate the pleasure of interacting with another person. Not only is he saying a few words, he is following my gaze, looking with me toward his mother to see if she is wearing glasses, like the woman in a photo that I just showed him. He is also imitating me for the first time and using gestures to show he understands the meaning of pictures - he puts a photo card of an umbrella over his head to indicate he knows how that is used.

This may not seem like much to parents or grandparents whose children are developing in a typical fashion, but for Adam there was a breakthrough. Only a few months before he had screamed when he entered my room. He flailed and hit me when I tried to get him to play with toys on the floor. He could not tolerate touch. He would not look at my face, hold my hand, or respond when I spoke his name. But gradually, by combining behavioral techniques to reinforce his socially appropriate responses while incrementally moving from toys he would play with, like Thomas the Tank Engine, to unfamiliar cars and trucks, I was able to help him escape from his world into the world that others enjoy. With that came two very important capacities - language and social interaction.
But, the real story of Adam is not his emergence from his inner world to ours, it is the story of who Adam has become today --a college graduate pursuing a science career with a girlfriend whom he hopes to marry in a few years.

I think there are many Adams. Adults who as children struggled to learn what comes very naturally for others: language, social skills, play. Most of us know about a few famous "outliers" like Temple Grandin, a child diagnosed as autistic who pursued a doctorate in animal husbandry and lectures around the world on what it is like to grow up with the autism label. She has had her story told by others and has told us her version herself. But there are likely thousands of untold stories. Some who never were given a diagnosis but nonetheless forged through life with loving, non-judgmental parents and found their "niche" in a world of music, art, or science. At a very early age they may have been perceived as misfits or "loners."  Yet, they were somehow able to break free of life-limiting labels to explore their unique passions and in the end delight the rest of us, neurotypical humans, with their unique sense of humor, artistic vision or scientific creativity. Others may have been assigned a label, received some kind of therapy like psychotherapy, occupational therapy or speech and language intervention that enabled them to bridge two worlds -- the social world most of us inhabit, at least some of the time, and their elaborate inner world of intense interests in computers, nano particles, dinosaurs or Thomas the Tank Engine.

These are stories of metamorphosis - how children who are locked in their own worlds emerge. But more important, they are the stories of unlocked genius. The very complicated set of disorders we call autism specturm disorders, it turns out, are for some, hidden gifts that open a world the rest of us cannot appreciate. Adam is just one such example of the genius within.  

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