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Scholar offers poignant first-person account of overcoming autism

By Hope Green

Stephen Shore has spent his life confounding other people's expectations. When he was a toddler, a psychologist recommended that he be institutionalized after diagnosing him as "psychotic with autistic tendencies." Fortunately Shore's mother disregarded the advice, and his condition improved under her care.

In elementary school Shore lagged far behind his classmates academically, and his second-grade teacher said he'd never learn to read. Yet a few years later he caught up in his subjects and began to excel in school. Today he's pursuing a Ph.D. He once had trouble getting along socially. Now, at 40, he has a wide circle of friends and has been married for 11 years.

Shore (SFA'92, SED'02) works with autistic children and adults at the School of Education, where he expects to complete a doctorate in special education by next May. He's on the board of the Asperger Syndrome Association of New England.

Although he used to hide his disability, he's now eager to share his life story, hoping it will inspire others with autistic disorders to achieve their potential.
His first book, Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome (Autism Asperger Publishing Co., 2001) weaves personal narrative with practical advice for educators and parents of autistic children, as well as for autistic adults.

"My goal in writing this book," he says, "was to present the auto-biography of a person diagnosed with autism and at the same time put it in the context of the current literature."

While knowledge about autism has improved dramatically since Shore's 1960s childhood in Newton, Mass., much of the public still has a distorted notion of the condition. For many people it conjures either the image of a small child rocking in a corner, or Raymond Babbitt, the autistic savant in the 1988 film Rain Man, who solved complex mathematical problems in his head but was so lost in his eccentric, private world that he couldn't function on his own.

Yet autism is not one narrow diagnosis, but a wide array of developmental disorders ranging from severe autism to Asperger syndrome. The latter was named for pediatrician Hans Asperger, who identified the condition in the 1940s.

"Currently, Asperger syndrome is considered to be at the high-functioning end of the autism spectrum," Shore explains. "People with the syndrome tend to be quite verbal, and with help, they're able to navigate the challenges of education, employment, and relationships and lead a fulfilling life."
Even so, Asperger syndrome does overlap with certain characteristics of autism, in particular a misinterpretation of sensory input to the brain.
"The information we receive through the senses comes through distorted, like a mistuned radio," Shore says. "We often don't pick up the environmental cues that we need in order to develop typically."

At 18 months old Shore was hit with what he now calls the "autism bomb." Until then a fairly typical baby, suddenly he became withdrawn, had extraordinarily frequent tantrums, and developed habits such as banging his head on his bedroom wall and spinning around with a finger in one ear. He also stopped speaking and would not eat solid food again until the age of four. With his nervous system on overdrive, he found haircuts excruciatingly painful and often recoiled from touch -- phenomena he later outgrew.
His mother learned what she could about autism from consulting with psychologists, and worked with him at home using music therapy and cognitive-development exercises. She also sent him to a therapeutic nursery school in Boston, which helped him regain his verbal skills. Gradually he moved toward the less severe end of the autism spectrum, more closely fitting into the Asperger category.

But elementary school, Shore recalls, "was a social and academic disaster." He was bullied in kindergarten, where he felt compelled to make strange repetitive sounds in an attempt to communicate with his peers instead of using the words he uttered at home. In second grade, instead of watching the teacher at the blackboard, he would sit at his desk and read astronomy books.

"They didn't take the books away because they didn't know what to do with me," Shore says. "They left me to my own devices. I remember thinking that second grade was an awful lot of empty space and that I was spending a lot of time reading these astronomy books and copying diagrams. I wondered, 'Shouldn't I be learning math or reading or something else?' I didn't talk about it with anybody."

Special interests are common for children with Asperger syndrome. Besides astronomy, Shore was fascinated with watches, and at an early age could take them apart and put all the gears back together again in working order.
Bicycles were another fixation: he could take one look at a bike as a stranger rode by and recite the names of every one of its components, how much the bicycle weighed, how much it cost, and in what country it was manufactured.

"One day I was doing one of these data dumps to my parents," he recalls, "and my mother said, 'You know, you should really concentrate on the person who's on the bicycle.'"

In retrospect, Shore believes his teachers could have used his special interests to teach him to read and do arithmetic. In his work at SED, he uses music as a tool for teaching communication skills. Sometimes he will even sing questions to students, and they will sing back their answers. "We see a lot of children with Asperger syndrome who have special interests -- it might be math, it might be computers, it might be chess, but all of these provide pathways by which to educate a child."

Shore's grades improved in middle and high school, where he also learned to play several musical instruments. He thrived in college, double majoring in business and music education at UMass-Amherst, where he found friends who shared some of his many interests.

His early attempts at a career were a letdown, however. He took a job at an accounting firm, but found that he couldn't fit into a corporate atmosphere. Office politics, hidden agendas, and disingenuous conversation -- mere annoyances to most people -- made him anxious. "People on the spectrum usually sense there's something there, but that's about as far as it goes," he explains. "That can be somewhat of a scary feeling, because you don't know whether to believe what you sense when it clashes with what you see or hear."

Shore's self-knowledge comes only in retrospect: by the time he went to college, he figured he had completely outgrown autism, and while he sensed that he might still have some cognitive problems, he ignored them. But in the early 1990s, he was ready to take another look. While studying for a doctoral degree in music at the School for the Arts, he was having trouble with a portion of a qualifying exam, and his mental block vexed him. "It came to the point where I wondered if something was haunting me from the past," he says.

Sufficiently curious, Shore went for a neuropsychological test and received a diagnosis of a "learning disorder not otherwise specified with characteristics consistent with childhood autism." His interest in autism deepened, leading him to consult with Arnold Miller, a prominent developmental psychologist who works with autistic children at a school in Jamaica Plain. Miller encouraged him to write a book, and with the manuscript in hand, Shore switched from the music program to SED.

In the course of his research, Shore began to recognize his own residual Asperger traits. To this day he is disturbed by distracting noises, has difficulty remembering faces, and rides his bicycle to avoid the sensory overload of the subway. At parties, where unstructured mingling troubles him, he engages in a specific activity such as playing the piano.
His disorder is not obvious to others, but if necessary he will reveal it to a new acquaintance or employer. The issue of whether and when to disclose that one is "on the spectrum" is something Shore addresses in his book, and it's likely he will address the subject in more depth in future publications.
Spreading a greater understanding of the autism spectrum, helping parents find the right help for their children, and helping adults cope with its residual effects are among Shore's chief goals. Experts in the field have high praise for his efforts thus far. In a review of Beyond the Wall, Thomas Cottle, an SED professor of education, writes, "The combination of pure storytelling and thoughtful insight makes this book a major contribution to our understanding and appreciation of these disorders.

Beyond the Wall humbles us and urges us to once again rethink the power of the human brain and the human spirit."

30 November 2001
Boston University
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