The University of Chicago Magazine

For the first year of his life, Stephen Shore developed normally. Then, at one-and-a-half, he stopped saying “mama” and started throwing more tantrums. He withdrew from his parents and environment. When his doctors diagnosed him at two-and-a-half with “atypical development with strong autistic tendencies,” they suggested his parents institutionalize him, said Shore—now a 46-year-old autism activist with a special-education doctorate from Boston University. One of seven speakers at an April conference on autism—"Autism through the Lens of the Social Sciences," organized by the Master of Arts Program in the Social Sciences (MAPSS)—Shore addressed an audience of about 60 students, faculty, and Hyde Park residents.

Richard Grinker’s daughter Isabel gazes at jellyfish at the Georgia Aquarium. Isabel was diagnosed with autism in 1994.

Autism has been a frequent media topic as the disorder’s rates have ballooned in recent years. One in 150 children in the United States has autism, according to a 2007 Centers for Disease Control and Prevention statistic, compared to one in 10,000 a generation ago. With the increase have come public fears of an epidemic, fueled by vaccine- and environmental-related concerns. In 2007 the U.S. Court of Federal Claims heard a case arguing that thimerosal—a preservative that contains mercury, found in common childhood vaccines until it was phased out from routinely administered vaccines in 2001 —triggers autism. Activists, parents, and politicians have persisted in their claims of autism-causing immunizations even though numerous major studies and scientific organizations have found no link between vaccination and autism. “Based on what I know,” said Richard Grinker, a George Washington University anthropology professor, “that question has been answered.”

Grinker—the grandson of Roy R. Grinker Sr., SB’21, MD’21, who founded Chicago’s psychiatry department—approaches autism as an anthropologist, exploring how knowledge about the condition changes according to different social, political, and cultural patterns. The higher prevalence is not caused by a medical epidemic, he argued; instead, modifications in diagnostic tools such as the Diagnostic and Statistical Manual of Mental Disorders, the American Psychological Association’s mental-health guidebook, cast a wider net. By the end of the 20th century, the guidebook expanded autism’s definition from a single entity to an entire array of autism spectrum disorders that range from mild (Asperger’s syndrome) to severe.

While Grinker delineated the history of autism awareness, Shore discussed his personal experience growing up with the condition. For autistic people, Shore said, it’s hard to “know exactly where the body ends and the environment begins.” Particular senses, he explained, “are turned up too high.” Some individuals react badly to fluorescent light, while Shore himself feels every hair pulled during a haircut. Autistic people also read social cues and language differently. Shore’s literal thinking occasionally hinders his ability to communicate with others. When he was about ten, he told the audience, “My friend said he felt like a pizza. ... I argued with him that he does not look like a pizza and probably does not feel like one either.”

School was also difficult. “I was a social and academic catastrophe,” Shore recalled, leading him to fall a grade behind in math and reading. When he was eight his teacher told him he’d never learn math. “But I learned just enough math to teach statistics at the college level,” he joked. He now teaches classes on statistics, autism, music, computers, and special education at several Boston-area institutions, including Boston University, Emerson College, and Lesley University.

Along with “extreme challenges” like the ones he faced in school, Shore said, come “extreme strengths.” He focused with painstaking detail on his interests (watch motors, cats, geology, computers, yoga, bicycles, music), reading “huge stacks of books” on the topics. By the time he got to college—“utopia!”—he found enough diversity in the student population to fit in: “If I wanted to ride my bike at midnight, I could find somebody else as crazy.” He also starting dating; in spite of the difficulties he had interpreting women’s signals, he learned from friends that if a woman kissed him, “she wants to be my girlfriend.”

Like Shore, Grinker, the conference’s keynote speaker, has a personal connection to autism—his 16-year-old daughter, Isabel, was diagnosed with the disorder in 1994. In her lifetime, he said, he’s seen dramatic advances in autism awareness. For example, in 2007 a 21-year-old with Asperger’s, Heather Kuzmich, appeared as a contestant on the reality show America’s Next Top Model. Said Grinker, “She’s quirky, she’s unusual, she understands” her condition, and she “was a very successful contestant,” chosen for eight weeks straight as the viewers’ top choice and ending up a top-five finalist.

Changes in cultural perspective have decreased autism’s stigma. In the 1950s, when the mental-health guidebook first used the term “autism” to define “childhood schizophrenia,” people with such disabilities were often institutionalized. Trying to get at autism’s roots to eradicate it, psychologists and doctors came up with opposing “nature versus nurture” hypotheses. A theory championed by the controversial psychologist Bruno Bettelheim, who taught at Chicago from 1944 to 1973, essentially blamed the mother for an autistic child’s behaviors, claiming that such a “refrigerator mother” did not correctly bond with her child. Others in the medical field argued that biological or genetic factors led to autism and that if the flawed elements were isolated and repaired, the disorder could someday be cured. Studies have found that there is a genetic basis—researchers at the National Institutes of Health suggest possibly ten or more genes on different chromosomes play a role in autism.

In the 1990s, with the rise of the disability-rights movement and public-policy changes such as the 1990 Americans with Disabilities Act, said Shore, doctors and activists started to understand the condition less as a disease to be cured and more as “a different way of being.” By making autistic children aware of both their strengths and challenges, he said, those affected can lead productive lives.