Sunday, June 10, 2007

Beyond the Wall:Stephen Shore

Personal Experiences with Autism and Asperger Syndrome
By Stephen M. Shore
Autism Asperger Publishing Company, 2001, 174 pages. $19.95

There is certainly no shortage of books about autism, and there is also a rapidly growing collection of titles about Asperger Syndrome. When a child receives a diagnosis in the Autism Spectrum, parents search for the key to unlock the puzzle of this mysterious and baffling condition, and it's hard to know where to start reading. Occasionally there is a special contribution such as Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome by Stephen Shore. As an individual who grew up with autism, Shore has an exceptional input to give.

Of course, every parent whose child lives within the autistic spectrum would yearn for their son or daughter to turn out like Stephen Shore or Temple Grandin. I myself am no exception to this rule. For that reason, as the father of a 22 year-old son with classic autism, this was a hard book for me to pick up. If I had not met Stephen at conferences and been awe-struck by his honesty and courage, I may have never opened the book. Although it was painful to revisit my dream for what was not to be, it was well worth the price. In Beyond the Wall, Stephen Shore emerges as a role model for children and adults and as an interpreter of the experience for parents and professionals. This little volume is a beacon of hope and a model of acceptance, and I recommend it with enthusiasm.

Diagnosed with “atypical development with strong autistic tendencies” and nonverbal until four years old, Stephen Shore was once recommended for residential placement. Because his parents believed in him, they rejected that idea, which was fortunate for their family and the world. Stephen is now completing his doctoral degree at Boston University in special education. He has a focus on helping people on the autism spectrum to develop their capacities to the fullest extent possible-whatever that may be. By walking us through his life story with insight and simplicity, Stephen guides the reader to an awareness of the different way of being which he shares with people on the spectrum. His ability to articulate his experiences clearly and with humor make the book seem like a friendly visit with the author.

The author begins by describing a typical day in his life including his strong sensitivities that are the residue of his earlier autism. The sound of a bluejay which may be pleasant to most in the early morning feels like the beak is scraping his eardrum. Shaving feels like a power sander on his chin, so Stephen maintains a beard. He rides his bicycle almost everywhere he goes not just for exercise and relaxation, but also for stimulation and to avoid smelly public transportation-and to meet people with a similar interest. Then based upon his mother's recollections and supplemented by family photos throughout, the author reports on his early life as a quiet and gentle infant who shocked his family by rolling over at eight days. By ten months, he was walking and often turning in circles with a finger in his ear.

As a toddler, Stephen would not kiss his father because of the aversive smell of coffee on his breath and the unbearable scratchiness of his moustache. By the age of four, he entered a therapeutic nursery school which had a strong psychoanalytic bent and only four other children in his class. There his speech resumed but with echolalia. His diagnosis was upgraded to “neurotic,” and he was able to go to a nursery school in a Jewish Community Center, but he struggled to relate to other children. This difficulty continues into public school kindergarten a year late where the author describes the wonder of learning and the terror of being teased. Many readers will find direction here in helping their children cope with bullying.

There is so much of value in Stephen's story, such as how he learned to develop friendships through common activities and the role that music has played in his life. By high school, there was more wonder than terror at school. Dating was an intriguing puzzle for the author, but by his college years, it was another dilemma he was able to solve. In the book we are treated to a brief contribution by his wife, Yi Liu, whom the author met as a fellow graduate student in music. The world of work was no less perplexing, and again the author takes us into his confidence and reveals his struggles to find a niche that works for him.

As a way of concluding, the author summarizes with simplicity and clarity his understanding of the autism spectrum. This is done in way that makes the concepts intelligible to families regardless of the individual differences of their child. Perhaps more than anything, Stephen Shore brings us as readers to an acceptance and appreciation for people who are different. With the simplicity and directness of a child, the author shares his well earned knowledge and wisdom. Beyond the Wall is on my “short list” of books about autism; it deserves your attention.

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