COLUMN ONE : Against the Odds: a Love Story : Jerry and Mary Newport grew up as outcasts. Now, they have found each other--and clues to the medical mystery that tormented them.
Precisely 28 weeks had passed since Jerry Newport had met Mary Meinel. He had been waiting for this very moment to pop the question. Twenty-eight, after all, is his favorite number.
“First,” he said, “it’s a perfect number--the sum of its factors equals 28. Twenty-eight is also the sum of the integers from one to seven and I’m seven years older than her.”
Looking back at their April, 1994, engagement, Jerry’s obsession with numerical perfection is both amusing and disturbing. And for good reason: It is a gift that comes at a terrible cost.
Jerry has Asperger syndrome, a neurological disorder that isolates those who have it from other people, even while sometimes bestowing unusual talents.
Mary has it too. And while her gifts lie in art, she may be the only person who has ever fully appreciated his delight in numbers.
Who else but Jerry could have found such significance in the landmark fig tree in West Los Angeles where Mary said she wanted the magic moment to occur? The tree, you see, just happens to be 119 years old.
“If you divide seven into the age of the tree,” he said, “you get 17, and that’s one of the numbers you can make a polygon out of in a circle. But if you square 17, you get 289 and we met on the 289th day of the year.”
Clearly, this couple’s love story--involving everything from an exorcism and an obsession with whales to a compulsion to read license plates backward for fun--is no ordinary romance.
It is a story of triumph in the face of a potentially devastating but often unrecognized affliction.
Asperger syndrome is often described as a social communication disorder that is similar to a mild form of autism. Patients have trouble understanding subtle gestures that convey what others are thinking or feeling. As a result, they are often characterized as rude, selfish or just plain weird.
Jerry, 47, and Mary, 40, spent most of their lives as social outcasts, feeling intensely alienated from others without knowing why.
Their wedding on Aug. 19, 1994, was a poignant turn in the lives of two people who had always assumed they were too odd to find mates and who, until they found one another, had resigned themselves to live out their years on society’s fringes, lonely and alone.
Their union has shown that it is possible for people with Asperger syndrome to find the kind of companionship and fulfillment that other people take for granted. And despite their communication difficulties, the Newports have become forceful advocates, as well as symbols of hope, for adults with autism or Asperger syndrome.
“They are superstars in the world of autism,” said Linda Demer, chief of cardiology at UCLA and a former board member of the Autism Society of Los Angeles. “They’ve been a source of inspiration for a lot of people.”
Syndrome a Mystery
Scientists have had so little success in unraveling the mysteries of Asperger syndrome that almost everything about it is in dispute--including its definition.
Many psychologists consider it a mild form of autism. But it was given its own category just last year in the standard manual of psychiatric disorders, the Diagnostic and Statistical Manual of Mental Disorders.
Like autism, Asperger syndrome is identified in the manual as a “pervasive developmental disorder,” affecting social interaction and communication and marked by repetitive behaviors and interests. While those who have the disorders are sensitive to sound and touch, people with Asperger syndrome show curiosity about their environment and eventually develop language and self-help skills.
In practice, however, the categories are harder to define--mostly because there is so much overlap between Asperger symptoms and those of the “high functioning” end of autism, psychologists say.
“It’s not like cancer or blindness where you can at least identify who has got it,” said Gary Mesibov, director of North Carolina’s statewide program for people with autism. “What makes this so difficult is we don’t even agree on the essential characteristics that allow you to say who the people are.”
Nor is there agreement on its prevalence--although more men than women have the disorder. Some researchers say Asperger syndrome affects as many as 1 in 250 people, while others set the figure at 1 in 650.
And although researchers agree that Asperger syndrome stems from a genetically caused malfunctioning of the brain or central nervous system, no one has determined what part of the brain is affected.
There is no cure, although patients--especially children--can be coached in socially accepted behavior. But first they have to be diagnosed--a task that requires psychologists to rely on mostly subjective judgments.
Some cases are easy to spot. A man with relatively normal speech who exhibits repetitive behaviors, strange speech affectations and extreme social awkwardness may easily suggest a diagnosis, psychologists say. But what about the gawky man with slicked-back hair and shirt buttoned to the neck who irritates his acquaintances with Civil War trivia? Or the “absent-minded professor” who is too absorbed by his studies to heed the social conventions of hygiene?
“There are many, many people with Asperger’s who lead productive lives and are really just considered nerds,” said Peter Tanguay, a professor of child and adolescent psychiatry at the University of Louisville, Ky., who plans to publish his study of Asperger syndrome this year.
But he added, “Unless there are fairly major disruptions of friendships and interpersonal relations with others, it shouldn’t be labeled Asperger’s.”
Whales and Numbers
Even on first appearance, there is something noticeably odd about the Newports.
Both have a stiff gait and a maddeningly monotonous way of speaking. Jerry sounds hauntingly like a real-life version of Dustin Hoffman’s portrayal of Raymond Babbitt, an autistic savant, in the movie “Rain Man.”
Mary is a tall, big-boned woman who favors long skirts and tie-dyed shirts. One day, she wears a cap from India over her long red hair--which turns out to be a wig. She shaves her head for her non-speaking role as a blue-tinted Bolian on the television series “Star Trek: Deep Space Nine.”
Jerry, who is tall and heavyset, keeps his longish blond hair in a tousled mop. He almost always wears jeans and a blue T-shirt featuring silk-screened dolphins and whales. He is so enamored of whales that two Halloweens ago he used chicken wire and newspaper to construct a killer whale costume that he keeps next to the sofa and strokes during conversations.
Today, the Newports sit in the living room of their tiny, cluttered apartment in West Los Angeles and talk about their first date on Nov. 28, 1993, at the Los Angeles Zoo. They had met a few weeks before at a Halloween party hosted by Adult Gathering, United and Autistic, a self-help group for adults with autism or Asperger syndrome.
Jerry recalls feeling instantly at ease with Mary. She was the first woman he had ever met who didn’t make him feel self-conscious.
“We could do silly things together, like reading billboards backward and guessing what it said,” he said. “Or I would turn license plate numbers into dates. Like if I saw the number 20,013, I could tell you that Oct. 17, 1955, is the 20,013th day of the century.”
Mary was charmed by his mathematical abilities: “I liked it. It was a different version of what I could do with my music and art.”
But they soon found they had more than their share of problems, too. Their inability to read each other’s emotions made the normal adjustments that new couples face even more difficult.
Mary had to learn not to take it personally when Jerry shrank from her touch in pain. He had to learn to keep his voice down during disagreements to keep her from “emotional shutdowns” that render her speechless.
“The kinds of problems they have makes it much more difficult . . . mostly because of the difficulty [people like them] have with empathy,” said B. J. Freeman, director of the Autism and Developmental Disabilities Program at UCLA’s Neuropsychiatric Institute. “But they do very well together. . . . It’s wonderful to see.”
In fact, their relationship is one neither of them ever imagined possible. The lives they led before they met are case studies in the kind of personal devastation that Asperger syndrome can wreak--especially when it goes undetected.
Jerry grew up in Islip, N.Y., knowing he was different.
He didn’t walk until he was nearly 2 and only learned to talk at 3 by imitating his brother’s pet crow, Blackey. He never looked people in the eye, constantly chewed on his clothing and nails and had a fascination with watching paint dry.
He was 7 when his mathematical abilities began to surface. He could add up a long column of three- and four-digit numbers in his head. Other calculations--like finding square roots--quickly followed.
At school, his talent with numbers, combined with his tendency to talk incessantly in a monotone, set him apart as odd. Most of the time he was shunned, except, he says, when his classmates wanted to dazzle some newcomer with his abilities. Then they would trot him out like a circus freak and bombard him with math problems.
“I remember being in the center of all these people asking me to do stuff and answering their questions so they would go away,” he said. “For me, it was a case of either getting no attention at all or . . . having to perform.”
Although he came to regard his gift as a burden, it saw him through in other ways. He was accepted to the University of Michigan at Ann Arbor and received a bachelor of arts in math.
By the time he graduated, he was capable of doing extraordinarily complex calculations in his head. He could change numbers from one base to another and could compute logarithms by knowing the sine or cosine. He could usually get the correct answer within a dozen decimal places. But when it came time to find a job, he was at a loss.
It never occurred to him to find work that would make use of his abilities. Instead, he drove a cab for nearly 20 years. During that time, he hardly dated. By his mid-30s, he was suicidal. He tried to kill himself by overdosing on pills, but changed his mind and got his stomach pumped.
“Rain Man” was a turning point. He identified with the main character so deeply that he contacted Bernard Rimland, the founder of the Autism Society of America. He found his way to UCLA’s autism clinic, where he was told he probably had Asperger syndrome.
He began attending autism conferences and soon earned a role as a spokesman for adults with autism and Asperger syndrome. He helped coordinate the first adult self-help group and chairs the National Autism Society of America’s ad-hoc panel of adult advisers with autism.
Although he regards the previous 20 years as “a waste,” he considers himself “one of the fortunate ones.”
“You can’t compare me to others, not even to Mary,” he said. “She had a much harder life than me.”
Maelstrom of Pain
Mary is eager to talk about her childhood, but during a conversation in a noisy cafeteria, she gazes upward and begins slapping her hand against her arm. There are too many conversations going on at once, she says, and she cannot filter them out of the discussion.
She has been prone to sensory overload all of her life.
As a child in Phoenix, she often responded to stress, loud noises or strong smells by spinning in circles or rocking.
Although she walked and talked at a normal age, she had a penchant for imitating sounds over and over. One teacher suggested she might be mentally retarded.
She did relatively well in school--until she reached puberty. Then, inexplicably, she fell apart.
“My brain turned to Jell-O,” she recalled. “I couldn’t make heads or tails out of anything.”
She dropped out of high school and went to Europe to live with one of her sisters in a religious cult, she said. There, cult leaders arranged a marriage between the 16-year-old Mary and an 18-year-old boy who she says couldn’t stand her. The couple had a son. But she soon left the cult with her baby and moved to America, where she had a son with a man she no longer sees.
The next two decades were a maelstrom of psychic pain. Without a diagnosis for her condition, she only knew that she felt profoundly alienated from other people. While she could usually find work as a piano tuner, she was socially naive and often became a target for exploitation.
In 1986, she rediscovered talents she had lost touch with: drawing and composing music.
Her methods are unusual. She draws without looking at the page, allowing her hand to follow its own course. Only later, she says, does she find hidden images that she had no idea she was creating.
She composes by waving a pencil in circles over a score sheet until a sensation tells her where to put each note. She says she has no idea how it will sound until she programs the score into her keyboard and plays.
David Quaschnick, an Emmy-award-winning makeup artist who works with Mary for “Star Trek,” describes her as “a very creative artist” whose art and music is “intensely creative.”
“She doesn’t have any formal training in art, but she somehow has a natural understanding of depth and focus,” he said. “Her music is the same way. It comes from pure creativity.”
But her art didn’t always draw such praise. In the late 1980s, relatives and friends who were convinced Mary was doing “the devil’s work” persuaded her to burn her art and music--and to undergo an exorcism.
The next few years were punctuated by deep depressions and two nervous breakdowns.
With her two sons, Mary had moved 14 times in 10 years, each time changing states and jobs. In between, there were bouts of homelessness, including time at a Los Angeles Skid Row shelter.
In 1991, she was so desperate for work that she shaved her head and attended an open audition with Central Casting. They agreed to represent her and landed her a job doing guest appearances on “Star Trek” the following month.
In 1993, a UCLA psychologist finally helped her make sense of the painful turns her life had taken. The psychologist told her she had “autism/Asperger syndrome” and referred her to Jerry’s self-help group.
Jerry told her about the Halloween party. She came as Mozart. He came as Willy the whale. She thought he was strange. He thought she was weird.
It was, they would soon discover, the first stirrings of love.
Jerry and Mary were married the following year on Jerry’s 46th birthday at St. John’s Presbyterian Church in Westwood. Mary’s adult sons were the only guests. After the ceremony, the four rode the bus to Santa Monica and ate ice cream and carrot cake at a park.
A year later, the Newports celebrated their first anniversary. Mary made the invitations, which featured killer whales in the shape of a heart. Jerry wore his whale costume part of the time, ostensibly to entertain some children.
Almost all of the guests were support group members, their relatives or professionals who work with people with autism or Asperger syndrome.
Marshall Weeks, 26, who describes himself as “the autistic Steve Martin,” thrilled people with his extensive knowledge of music trivia. Dean Beuerman, 23, who regularly combs the newspaper for weather-related stories, grilled a woman who had just returned from a trip to June Lake about the depth of the snowpack.
“I think that was the first party I ever enjoyed,” Mary said. “Everyone was conversing and being social in their own way.”
Clearly, there was a lot to celebrate. Jerry had finally left his job as a driver to work as an administrative assistant in UCLA Medical School’s financial department. Part of the job requires him to proofread accounting spreadsheets--he can look at a column of numbers and know if one is out of place. The only difficult part for him is operating the copying machine.
Meanwhile, Mary passed the high school equivalency exam and is planning to enroll next March at the Gemological Institute of America to study jewelry design. She also was recently invited to exhibit her art at a soon-to-be-opened gallery in Ventura County.
Mary says she feels more comfortable in the world than ever. And Jerry, who spent years wishing he were more “normal,” once again takes pleasure in his talent for numbers. For the first time in years, he believes the future holds some promise--including yet another perfect number.
You see, on July 31, 2016, it will have been 8,128 days--or 1,161 weeks and one day--since Jerry proposed to Mary. Of course, 8,128 is a perfect number.
Said Jerry: “I had never dreamed that I could live in such spiritual synchrony with anyone. What else matters? That we are both . . . savants and perhaps other labels is not the point. We are just meant to be together.”